need spome advice on this cidp rollercoaster ride??
February 17, 2012 at 8:47 pm
ok…it’s bad enough with this disease being so unpredictable but the treatment options are REALLY starting to stress me now. Summary: diagnosed in june 09, started ivig every 12 weeks for 2 years, no significant improvement.
Prednisone trial in aug 2010 got much worse quickly.
went to mayo june 2011 started ivig every week for 16 weeks. small improvement in strength, not significant. It DID help a lot with fatige though which was good.
did nothing Nov or Dec did have gradual increase in fatige during this period. Jan 2012 went in for 5 plasma exchange sessions. Waited for 3 weeks had no significant response from this either. starting last weekend i felt worse, a lot more parathesia, waited it out for 5 days then called my Dr.
I THOUGHT her next plan was rituxin, but apparently after further research she decided that she did not feel this would be the right thing for me. I really didnt want to just do nothing until i see her in march because it felt like things were getting worse. So we agreed i would go back on the ivig, because even though i didnt see extreme results it did keep me from getting worse .
Meanwhile this week, while waiting for her to set up the ivig again, I woke up yesterday feeling better, it felt like someone had unwrapped many layers of plaster off my feet???? Did the PE just start working a month after having it??? is it just a fluke thing and will I go back to heavy feet in a few days?? Do I go ahead and do the ivig she has set up—its another loading dose which i havent done in a while.?? Is there any way that the ivig could be hindering my improvement? Now that the
PE has removed everything will I be adding stuff back in with the ivig and make things worse or will I possibly benefit from the ivig and maybe get more out of it now that i have had the PE.??
I know this is a lot of questions and if ANYONE who has been in the predicament has any info I could use some advice. Meanwhile the hospital is calling me to set up for this ivig because they just got my orders, Ive been ignoring the calls to give myself time to make a decision—–HELP!!!!——–
February 18, 2012 at 4:12 am
Humm…. Gosh, I don’t have any advice to offer, I wish I did!! Are the effects of PE not cummulative, like they can be with IVIG? I don’t know how long PE “should” take to work… but it sounds like if you are worsening in any way that SOMETHING should be done! I wouldn’t think that IVIG could cause any problems.. were you ever on IVIG + immunosuppresants? Immuran or any of those? That’s one of the options my neuro has talked about being a possibility someday.. I hope someone can give you some more info!! I’ll be sending positive thoughts your way!
February 18, 2012 at 2:20 pm
thanks—My Dr hasnt mentioned immunosuppressants but i was going to mention it to her in march. Im not sure that since i responded badly to the oral prednisone if that makes me a bad candidate for any type of immunosuppresants??
so many variables with this disease. I thought she would do more than one round of plasma exchanges before deciding on it–maybe since the PE worked about the same as the ivig for me?? and the ivig is easier?? not really sure, but neither one provided any significant imorovements so I am definitely ready to move on and find something that will.
AnonymousFebruary 18, 2012 at 5:06 pm
I am not a doctor or a nurse but I keep rechecking your entry to see how many weeks between infusions – 12???? is that correct?
There has been a lot of info published lately that indicates most neuropathy patients are significantly underdosed. I had a lot of troubles with my IVIG infusions and it took a long time to regulate them and to find the right dosage. What I did find out is that I needed them much more often than originally prescribed. Most on this forum are getting their infusions every month. You might start there.
My advice – DO NOT CANCEL THE IVIG because you have just had (less than 24 hours of) relief. Think about how many hours you have suffered – and you will throw that over for a few short hours? NO WAY!
If this crazy disease has taught you anything is that there are so many unexpected twists and turns. I’ll bet all of us on this forum have experienced a glimpse into what life could/should/might have been/used to be – without that crazy nerve pain/neuropathy. And we will all tell you it changes back to the old CIDP pain in a blink of an eye.
KEEP ON GOING – ask your doctor about dosage and timing of infusions. Stay on course ! (and, like the rest of us, pray for a cure – or at least something to give us all relief).
Good luck and keep us all posted
February 18, 2012 at 7:48 pm
Thanks pattyo—YES !!! a cure for all would be great—I’m praying for it. I have not cancelled the ivig and will most likely get it next week. My only concern regarding the IVIG is Im not sure whether or not it is doing anything for me, and have been very patient with it, at first every 12 weeks, then weekly for 16 weeks. Its been practically my only treatment since cidp—
-My Dr is suppose to talk to Dr Dyck @ Mayo about me before my appt in March. hopefully he will have some helpful suggestions and she will have some options for me.
Thanks for responding 🙂 I really miss our old forum, the format of it was more user friendly, not so many people seem to be using this new one. hopefully it will pick up–ther is so much to learn from others experiences and imput.
AnonymousFebruary 19, 2012 at 12:38 am
Lori it sounds like your doctor is not all too familiar with CIDP and was not trained for dealing with it. There are neurologists out there that have had special training in the diagnosis and treatment for GB and CIDP. I can honestly say that I did not react well with my first treatment of IVIG and cannot have it again. My first session of plasma exchange did not work for me either. Nor did the oral prednisone. What did work was large doses of prednisone by IV. I did have a relapse, and that was handled with plasma exchange and the iv doses of prednisone which did very well together. We all wish that we would have an extremely immediate improvement with treatment, but that does not necessarily happen in that way. After treatment I saw slight improvements daily but did not see a very significant improvement until about a week or more after treatments ceased. We are all different in how we respond to treatments and what may work for one may not work for another. I know this may not be the answer that you want to hear, but try to keep an upbeat attitude and keep asking questions! 🙂
February 19, 2012 at 2:37 am
Lori, I wouldn’t think the way you responded to the prednisone would be indicative of the other immunosuppressants.. but of course who knows!?!? Prednisone is pretty notorious for adverse side effects and I know from what i’ve read some motor neuropathies can be worsened by steroids, but I would imagine that the other immunosuppresants would still be effective, though I have not researched that specifically.. I know prednisone has TONS Of side effects, but from what I am aware of the immunosuppresants main side effects are, well you get sick easier.. I think nausea maybe. but like I said I haven’t researched them enough yet.. Hopefully the IVIG or PE will kick in and that will be that! 🙂 It is so strange how this all works!! Good luck!!!
AnonymousFebruary 19, 2012 at 5:18 am
I’ve been on IVIG for 2 years and 3 months, 25 gms every 10 days. My doctor wants to lengthen my IVIG to every 12 days now. When I tried every 14 days x3, I relapsed. I don’t feel I could handle the 12 day frequency; even though it’s a difference of only 2 days. I don’t feel that “normal” or great. It’s like a rollercoaster ride; some days I feel okay; some days my thighs feel weak. I still get the electric shocks, tingling, and muscles aches. My doctor says every 10 days is too frequent for IVIG. But if I need it, I dont think it’s “too frequent”. I also have this “numbness” underneath the ball of my right foot. I have this feeling in my legs now; I think it feels like “mild burning”. These are new symptoms for me.
I don’t understand this disease. Does anybody get muscle pain? Or is it nerve pain? Or is it related to the demyelinated nerves that’s causing the pain?
AnonymousFebruary 20, 2012 at 9:25 pm
exposurf: I was on 25g IVIG – infusing 12;5 g 2x/week. The idea was to catch me before I relapsed.Originally, I started with a loading dose with 1x/month, switched to weekly, to 2x/weekly. I had to switch brands along the way. At 2x/week I felt like I was trapped to the iv pole and the horrible side effects, etc. After many months I cried uncle – or my body did. I developed a rash and other reactions (chest pressure, allergic reactions) and we discontinued it. Dr is looking into sub Q, apparently a great delivery mechanism for IVIG without the side effects; of course, insurance co. is giving us challenges.
Needless to say, the nerve pain has spiked and I am pretty miserable. I have only had one set of infusions (25 g) since Thanksgiving and I can’t say what’s worse: loosing my life to the iv pole – or tryng to keep a happy face while handling the horrible nerve pain and neuropathy. I feel like I have poison ivy inside my veins, only instead of blood it is little glass pieces inside my body. It is horrible feeling – as I type I am squeezing my feet over and over; they itch! they hurt! they burn! I can’t walk without the same pair of heavy duty sneakers (with heavy cotton socks) that I have worn for 3 years because my body can’t handle the stimulation. I also get muscle pain and weakness. I get fasicullations as well, but since I d/c the IVIG, they have quieted down (or perhaps it is that I can’t feel them).
*Perhaps you might try a few months every 10 days and see what happens. Tell your doctor about reading many patients’ treatment history and see what he does. My dr. – from the Weill Cornell Medical Center – is very open minded and interested in the news we pass around on this forum. I found that the better the CIDP Dr, the more open minded they are to all areas of input, including this forum!
Throw your shoulders back (ha!), chin up and make sure you take time to remind yourself that you can do this!
February 21, 2012 at 2:38 am
Patto O- what did your rash look like? the first infusion I got a rash on my palms and feet- itchy and teeny tiny little blisters/vesicles.. then the 2nd time i had the same rash but bigger vesicles, but also developed little excema spots all over my legs.. then this 3rd round I took pepcid and benadryl beforehand and for 48 hours afterwards, and no rash (same brand of IVIG), however the IVIG didnt’ help me either.. I told my husband maybe the infusion center just gave me saline and sole my IVIG on the black market!! (can you imagine!?! haha that stuff is so expensive) .. but I did get my typical chest pain with the infusion– the infusion nurse said many people complain of this.. she gives me extra benadryl now due to that.. but if my rate gets too high (can’t handle much over 75g/hr) my chest gets tight and just uncomfortable!!! and it’s kind of uncomfortable for about 24 hours! What in the world causes that you think?? I have my next and increased dose tomorrow.. I am hesitant to take the benadryl and pepcid like I did last time.. maybe my body needs that reaction to take place to be effective??? Crazy I know.. but I just don’t understand why it didnt; work last time, other than I was sick with a virus.. .. I am just PRAYING this time works!!!!
February 21, 2012 at 3:02 pm
Well, there are so many questions from different people, so I am going to try to respond to what I remember. Regarding the pe questions; it is not that the treatment is cummulative as someone asked. Everyone is different regarding how fast they overproduce the autoantibodies, so people need the pe at different intervals. Essentially the process cleans out the autoantibodies and you start fresh. Some people get the ivig right after, the same day, so that the ivig too is starting with a clean slate and essentially can flood the system with good antibodies.
Abouit the prednisone comments, some variants of cidp actually get worse with prednisone. I seem to remember several Miller Fisher people saying they reacted worse with steroids. Just because you reacted badly to prednisone, an immunosuppressant, it does not mean you will react badly to all. They each work differently. There are many, cell cept, rituxan, cytoxan, imuran are mentioned here frequently. MANY have benefited greatly with a cytoxan protocol that has put them in remission. Typically people who have not responded to the typical protocols end up doing the cytoxan protocol. As well several have benefited from the autologus stem cell harvesting which first uses a cytoxan among other suppressants first. I noticed Linda M has responded somewhere on the new site, maybe she will read this and elaborate as she knows the protocol. Basically you have to have had no results with other treatment before they consider this protocol.
About the ivig comments, some people are allergic to ivig, your doc should have done a test to see if you are. If that test came back OK, then what you are experiencing are “reactios” As you mentioned, they can be controlled with benadryl and a slow infussion rate. Another way to alleviate is to switch brands. We use Gammaguard but had used gammunex and had the reactions you speak of. In the begining we also used gammaguard s/d, it is a powder mixture that is mixed with salene, that is what we reacted to the worse and switched to gammunex (better, but still reacted) we now use gammaguard liquid, straight out of the bottle. For the person explaining their ivig treatment, it sounds like you go to a infussion center, you can ask your doc and insurance if you can get home health care. We have our nurse come to the house, every 2 weeks, 6 hours each infussion.
The last person mentions an increased dose and chest tightening, you say you cannot go over 75, just demand that they don’t! Also you mentioned a virus, when we get sick, we feel weaker sooner. Essentially the immune system is turning on to kill off the virus, but because of the autoimmune disease (cidp) it is also creating the extra autoantibodies that don’t stop producing, therefore using up the ivig faster.
Exosurf, if 10 days is what works, that is what you need. Unfortunately need and what doc will give are two different things. To factually prove the need, ask the doc for a nerve conduction/Emg after ten days and then agree to try his plan for a few cycles and then repeat ncv/emg. Then he cannot dispute what you feel. Ideally that is not the right thing to have to do, because each time there is a relapse, by the time you load up again it is hard to say if all of the new damage will repair correctly. Sometimes though for the doc and insurance proof at our expense is necessary.
Regarding ritixan, there have been several on the site who used it and they had to be on it at least 6 months I believe, maybe someone who has used it can verify that. Also with the Pe, I believe you would be washing EVERYTHING out. Pe followed by ivig has worked for some, you just have to tweak how long the pe will work in conjunction with the ivig before you do the pe again, hence cleansing out the ivig as well.
February 22, 2012 at 12:40 am
lots of great info—thank you everyone 🙂 I’m glad to see the site picking back up again. I am scheduled to go for another loading dose of ivig thurs and fri this week. Maybe i will see a better response from it this time since I have had the PE??
I plan on asking my Dr next month about why she decided against the rituxin —possibly trying some sort of immunosuppressant— Why she doesnt think i should try another round of PE? — if she feels i should stay with the ivig –then maybe add something with it??? Im sure i will have more ?s by the time of the visit.
I have even considered calling Dr Dycks office myself to see if he would return my call and talk to him about what I should try next. I only saw him the one week in June. Would love to have him as my ongoing Dr but it’s really not practical flying out to minnesota every time i have an appt.
I did really have my heart set on the PE working for me–and would have been happy with even minimun improvement 🙁 but i guess that’s the whole thing with this disease—-finding what works through trial and error. So far the only thing that made me worse was the prednisone, the ivig and PE didnt make me worse. The ivig did help with my fatigue, but no strength increase.
But yess…I will continue fighting this horrible disease–coming up on three years in june since i was diagnosed and started treatment. i really thought I would have it figured out by now. Maybe the immune system will just burn itself out—I read someplace that , that can happen—-wishful thinking 🙂
February 22, 2012 at 3:31 am
I was wondering? Did the pe give you any improvement? It seems like the ivig really did not help that much either. Is the cidp dx confirmed? I only ask because Charcot Marie tooth, a form of MD also presents the same way physically and the ncv/emg looks the same as cidp. CMT was actually our second dx, but I knew it was wrong because we went down so hard, so fast. We went to the next doc and I suggested gbs, he agreed and did a spinal to confirm. The genetic testing for CMT goes to a specialty lab and takes six weeks, so we did the spinal for a quicker conclusion. The CMT eventially came back negative. I only bring this up because youdo not seem to get any relief from the pe or ivig AND the steroids made you worse. Just a thought.
Also Lori222, will your doc let you get treatments at home? It would be so much easier on you, we love our nurse, we always get the same one, poker games, dinner, movies, xbox, our nurse is awesome my son and the nurse (a guy) have so much fun in the man cave for 6 hours!
February 22, 2012 at 11:23 pm
the pe and ivig both gave me very minimal improvement. I hope it’s not just that im expecting too much?? Even after having ivig for 2 and a half years my ncv/emg has not improved. on the good note, it didnt get worse. It seems the ivig is keeping me from getting worse—but not quite enough to help me get better. that is why im thinking maybe something with it. Or maybe since having the PE I will feel more effect from the round of ivig tomorrow.
Dr Dyck @ Mayo was my second opinion and comfirmed CIDP. He did a lumbar puncture which was slightly elevated and a sural nerve biopsy which showed a pattern of demynilation and remylination, inflammation. He agreed with my Dr on the “atypical cidp” diagnosis. so i just assumed they were both right—but who knows.
I have started getting the ivig at my small local hospital and for right now am back on the 2 days every 6 weeks loading dose again–so it’s not bad.
between now and my next appt i really plan to do some research and try to see about what might work with or instead of the ivig.
March 3, 2012 at 11:09 pm
Lori, I’m sorry you are having so much difficulty finding the best treatment. Unfortunately, there is a lot of variability in how various cases respond to different treatments. I had IvIg, PE, Prednisone, and Mycophenolate Mofetil, the last which I am still on. The IvIg didn’t do anything for me except possibly stop the progression of weakness for a short time. It is not unusual to have to try various treatments to try to arrive at the best course.
Five treatments of PE is typical, but I was fortunate to get nine. My opinion is that more is better, although one is never able to generalize from individual cases. I might have recovered with fewer.
March 3, 2012 at 11:15 pm
By the way, remember that the treatments, whether by IvIg or PE, are not aimed at improving your strength, but at halting the progress of the thing which is damaging your strength. When the attack on the nerves is stopped, the natural healing powers of the body restore them, to the extent possible.
AnonymousMarch 4, 2012 at 9:11 am
I am new to this forum and from the UK, so things may be different over here, but I was diagnosed in June 2011, had a relapse in January 2012 and am on steroids, which seem to be having a positive effect for me, but the side effects are nasty! Due to the “fun” of even getting diagnosed and the variability of the symptoms/treatments, I have written a blog on the matter (just to try and help others): mycidp.blogspot.com
I will update this as my diary regularly, as the one thing I have learnt is the earlier the diagnosis, the more likely that the treatments are effective.
March 4, 2012 at 6:09 pm
Drew, steroid dosage is generally tapered down over time, and a transition to long-term treatment is made. (In my case it is Mycophenolate Mofetil.) Do you have a long-term treatment plan to get off the steroids?
March 4, 2012 at 11:05 pm
Hi Gh glad to have you back on the forum—you always have such helpful advice 🙂 I did figure out during my time off the ivig that i do relapse without it—but am just not getting better with it. I think I mught have to add something with it, not oral prednisone, already tried and did not work for me. Are the other two drugs you mentioned immunosuppressants?
March 4, 2012 at 11:08 pm
welcome Drew, i will check ouit your blog 🙂
March 4, 2012 at 11:15 pm
Lori, Mycophenolate Mofetil is one drug — an immunosuppressant. Its brand name is Cellcept. My protocol was to taper the prednisone to get off it in about a year. The MM was taken concurrently, but takes awhile to become effective, as I understand it. Now I only take MM — nothing else for CIDP.
March 4, 2012 at 11:24 pm
thanks—I will mention it to my Dr when i see her later this month. she has never mentioned any immunopressants, do you think my doing badly on the prednisone rules out all of them? Do you get a lot of side effects from the MM?
March 5, 2012 at 1:36 am
Doing badly on prednisone does not rule out other immunosuppressants. They act in different ways and so have different effects in different people. Immunosuppressants, except for prednisone (it is both an anti-inflammatory and an immunosuppressant), generally take a long time to have noticeable effects. CellCept is reputed to 3 to 6 months, while azathioprine (Imuran) takes even longer, up to a year. There are others to try as well, each with varying times to effectiveness and each with different side effects. You may need to try several, in sequence, until you find one that works for you.
I had to reduce the amount of time away from work, so I also used prednisone in disgustingly large doses for a few months while waiting for azathioprine to kick in, after not responding to CellCept. The combination of PE, prednisone, and azathioprine worked very well for me. I was able to finally taper off the prednisone. Prednisone caused other problems, but it was, on balance, a reasonable trade-off for me.
March 5, 2012 at 1:46 am
Lori, I cannot make any recommendations on your particular case, but can only suggest that you discuss all possible options with your doctor.
In my case, I had no side effects from prednisone while taking it for about a year. I have no side effects from the Mycophenolate which I have been taking for more than a year at a constant dosage, except that it seems to take me a long time to get over colds.
March 5, 2012 at 1:52 am
thanks Markens i would definitely put up with the unpleasant side effects if it meant altering my immune system of the cidp amd regaining strength. For me, i had an immediate increase in weakness from the prednisone, started on my 4th dose.
So —-since the ivig seems to be keeping me from getting worse, would it make sense to continue with this and add an immunosuppressant?
March 5, 2012 at 2:51 am
I can only comment on my case, but it was clear that PE alone was not going to do the job and that I needed something else. PE worked very well for me, returning me to nearly full function; it just did not last for any reasonable length of time. I wanted to stay away from steroids if I could, so CellCept, with the shortest induction time, looked like a reasonable choice. Unfortunately, it did not work out, so I went with the regime I posted above. If I have been using IVIg and working at nearly full function, no, I would not have added an immunosuppressant. If the IVIg was only keeping me from getting worse, I first would try a very aggressive IVIg protocol, perhaps getting loading doses every other week for a few months (my insurance would have allowed it). If that did not work well, I would then add an immunosuppressant.
However, like GH said, you need to discuss these options with your neurologist. My opinion, as a well-informed patient, is that your IVIg protocol could be more aggressive. Yes, it would be more aggressive than typical, but there is reason to that it might be beneficial. There may be extenuating circumstances that argue against an aggressive protocol, but again, you need to discuss those with your neurologist.
AnonymousMarch 5, 2012 at 9:10 am
No there is no long term plan (and one has not been mentioned – to me). Again maybe they do things differently in the UK? But there seems to be a lot of things I wasn’t informed of at the time, that later seems very relevant. I am seeing my consultant on the 13th of March and will definitely ask him about a long term plan, as the steroids are playing hell with my diabetes!!
March 6, 2012 at 3:26 am
I was glad to read your post Markens—it confirmed what I was thinking after I spent the evening reading up on all the various immuosuppressants. They do not sound good–, and if it’s possible to stay away from them i would prefer it. I have been really paying attention since this last loading dose of ivig, to see if I can determine how long it is lasting. It’s difficult as my nerve damage is more axonal than myelin, very slow to progress so very slow to heal. Right now Im scheduled for loading doses every 6 weeks—-I thought I might try to get it every 4 weeks and see how that goes. I think the reason it worked better this time was because I had the PE and am going to ask if I should do that a few more times. So many things to consider—–guess i will know after the 19th.
Drew—no, diabetes and prednisone do not mix 🙁 I guess unless it was working REAL good for the cidp, I’d really have to weigh the pros and cons. I know of too many people who have had their feet amputated due to diabetes.. Be careful.
AnonymousMarch 6, 2012 at 4:17 pm
Lori – I’m not sure I wanted to know that! Both my doctor and consultant know that I am diabetic and taking prednisone and whilst they know it is impacting my diabetes they have not said it is anything to worry about…… I am keeping a log of my blood/sugar levels 3 times daily and there is a definite pattern that the evening after I have taken the steroids (in the morning) it is high and the next morning it is low – the max it has got to is 19.6 the min 1.8 (and yes I have re-calibrated my monitor – twice now!), my doctor just says see what happens when the dose is reduced, but don’t change the gliclazide dose.
March 7, 2012 at 1:15 am
Drew maybe the prednisone is just suppose to be short term for you and won’t cause any long term diabetic complications??? long term high blood sugars can lead to neuropathy—the problem you are trying to fix–right?
I work in a res.care facility and one of my patients is diabetic, he needed prednisone once, and we took care of it by using a fast acting insulin along with his daily insulin to keep it under control .
AnonymousNovember 7, 2012 at 2:38 pm
all of you seem to up on all theses medications for gbs and cidp. have any of you had one ivig a week for 3 months…have heard of it and it just seems resonable to me. i am 8 months and first diagnosed gbs, now they think cidp….was just given prednisone 20 mg once a day for 3 months after 3 months ivig…one week a month for five days…..wish there was some answer.. any answer will be helpful..
November 9, 2012 at 12:14 am
cathebt , yes i tried the ivig weekly as you asked above. my ivig regiman was: loading dose (2gm per kg) every 12 weeks for about a year and a half. no improvement. loading dose again every 6 weeks , still no improvement..
I went to Mayo in Mn to see Dr Dyck. he set my ivig up similar to what you mention above. I went 2 days per week for 4 weeks then 1 day per week for 12 weeks. Still no improvement. hopefully you will have better luck with it—it has worked for a lot of people.
Dr Dyck felt the weekly schedule of less ivig kept it at a more stabile level in the body than the less frequent infusions of more ivig.
AnonymousJanuary 30, 2013 at 2:06 am
The solution is SCT. I tried IV-IG – Prednisone – Cytoxin – all of it was like blowing against a boulder. Whatever it did – I had a hard time distinguishing if it was real or in my mind. Then I did SCT – and that is the no shit fix. Recovered all of my function within weeks. I have some lingering foot pain – and I spread my toes as much as I used to be able to do. But everything else is back to 100%. I move the same amount of weight in the gym as I did before. The best advice I can give anyone with CIDP – is go get a SCT – and do it as soon as you can. The biggest factor in how much you recover is how long you have had the illness. I became symptomatic on July 1st 2009 – and had my xplant on March 4th 2010 – 7 months. Looking back from 3 years later – CIDP seems like a bad dream.
January 30, 2013 at 2:29 am
I’m not questioning the value of SCT, but it’s not for “anyone with CIDP.” I am classified as having CIDP, but it’s in remission and my strength has returned to almost normal. I have no need of SCT, and wouldn’t qualify for it anyway.
Treatment for CIDP must be individualized.
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