AnonymousDecember 20, 2007 at 8:15 pm
Have not been on for some time -will be having my GBS 4 year anniv. Jan 6 -so from just blinking to now walking with a walker – and moving towards loftstrands the progress is still coming -slowly ever so slowly but with rehab 3 days a week OT,PT Aqua Therapy things are looking up — hands,quads -hamstrings -the sit to standing moves are still tough -will be heading tomorrow to have the last modifications on my van so that I should be able to get out more often (can use walker or power chair)..
All that said I have been following are latest (US) sports scandal as many of our baseball players have been accused of taking steroids to enhance muscle ,stamina etc . One of my therapists asked me if the taking of such drugs had ever been discussed by any of my doctors during my recovery — I do not remember any conversations –but I said I would mention this on the forum and see if there might be some information from others who are also recovering.
Needless to say I won’t be to upset if the word comes back that it does not work very well for us GBSers’ because at my age (70) I feel my baseball days are over!
I’m interested to see any responses! The best to everyone during this Holiday season .. I can not express how important this site has been and continues to be as I progress.
A Red Sox fan for all you baseball fans!:)
AnonymousDecember 20, 2007 at 8:36 pm
He Robert, welcome 🙂
Steroid treatment is not used for GBS. I know there is someone on the forum (I forget who), who actually said that they have no doubt that it was because of their steroid treatment while in the care of a doctor for GBS, that they actually never fully recovered – how true that is, I guess we will never know.
I am taking an exert out of a new book written by Ds. Gareth Parry and Joel Steinberg called : [B]Guillain-Barre Syndrome[/B] : [I][B]From Diagnosis to Recovery[/B] [/I](American Acacemy of Neurology)
Page 152 – 153 :
Corticosteroid medications, such as cortisone and prednisone, were first used to treat GBS in the early 1950’s. Initial reports indicated that they were effective. However, the chronic form of demyelinating neuropathy, CIDP, was not distinguished from GBS during that era. In retrospect, many of the patients who responded to the treatment probably had CIDP. Small controlled studies done during the 1970’s showed no beneficial effect: [B]in fact, the patients who received prednisone did slightly worse than those who received no treatment[/B]. Further studies were done as recently as the late 1990’s, using different formulations of steroids and different routes of administration, and again no benefit was shown. One would think that all the evidence against the beneficial effects of steroids would have eliminated their use. However, some patients are still receiving prednisone or some other steroid for the treatment of GBS. [B]The authors strongly recommend that GBS patients not receive any form of steroid treatment for their GBS. These medications are ineffective and have many risks, some of which are severe and even life threatening. [/B]
AnonymousDecember 20, 2007 at 10:55 pm
Ali is right, steroids can be counterproductive for GBS, but can help those with CIDP. I am assuming that you know the difference between anabolic steroids used by the athletes & prednisone or methylprednisolone (infused steroids) used by hospitals & clinics for knocking down inflammation in many illnesses. There is a huge difference! I hope that your PT was not hinting that you actually try anabolic steroids, as no one should be using these?
AnonymousDecember 21, 2007 at 3:18 pm
I was trying to remember some earlier posts re: steroids and their use in earlier years — my comments to my PT person was that I doubted that there would be benefit from use. If there was we would have heard about it some time ago –The PT person is familiar enough with my condition but has mentioned a few times that he is not knowledgeable as to all the details of GBS ..
Onward to better things in 08
AnonymousDecember 21, 2007 at 4:58 pm
I haven’t posted for a while since my dad passed away but I still check the site every now and again.
This current conversation is important to me – they gave my dad steroids in the hospital when he became septic. We continued to question the usage after reading that it did not help with GBS. It was after the introduction of steroids that his body started have [B]major [/B]problems absorbing all the fluids. He was blown up like Jabba the Hutt. They suggested that he was storing the fluids (IV fluids, liquid antibiotics for infections they never found, etc.) in his 3rd spacing and that was compressing his lungs from the outside and possibly causing congestive heart failure. They said that his heart just stopped and they could not revive him after 20 minutes. Perhaps the steriods caused all of this? Also, he was starting to show some recovery in his neck, jaw and seemed to initiate some breaths on his own. And then the progression seemed to stop there- after they started the steriods…
December 8, 2016 at 11:38 am
People are far too quick to buy into the newspapers and 24 hour rolling news view of anabolic steroids. That’s ABUSE of a medication for a non-medical situation. Anabolic steroids can have a range of superb therapeutic uses. If you go onto Google Scholar or even better Athens if you’re lucky enough to access through a university library and type in Anabolic Steroids and CIDP or polyneuropathy you will see quite a few papers on the topic. These were never double-blind experiments, but open papers regarding the use of anabolic steroids in patients with severe muscle wastage (just as they are used in HIV sufferers), but a couple of papers also showed therapeutic benefits especially regarding Nandralone Decanoate.
It has been found that androgens are extremely important in the healing of the myelin sheath. Since male patients using IViG have been shown to lose up to, or over, half of their natural testosterone production where is that natural androgen coming from to help heal the myelin sheath. if you are over 40 years of age your testosterone levels are again dropping naturally, so this in conjunction with IViG’s impact on natural endrogenic production, I again ask where is the androgen required to help reverse the demylination process.
Most of these anabolic compounds have been around for many many years and their actions on the body are well studied. Can the same be said for IViG the “Off label” medication that is used with varying success in patients, and doctors, not to a single one can give you a definitive theory on why it works? We just accept that it does, we accept the side effects if we get any (I got asceptic meningitis every time i took IViG regardless of what prophylactics were taken before my treatment) and after eight years IViG no longer works for me. My choices are prednisone with its own huge list of damaging side effects or nothing. I choose nothing. I deal with the pain, I don’t get any better, but I’m not going to get weight gain, cushingoid appearance, hyperglycemia, peptic ulcer disease, insomnia, infection, cataracts, and osteoporosis from not taking daily prednisone. There has also not been one large, long term double blind study done on the multi-year use of IViG on the body. Not one. Sure there have been small studies, but again these were open papers, so are seen with little regard within the medical community. Now I’m not saying anabolic steroids are the answer but shouldn’t we be examining as many different different approaches as possible rather than continuing to use the same four or five treatments that have existed for easily the last 30 years. Sure there is the hope of stem cell treatment if you can afford it, your HBO covers it, and you are in that small catchment window of the chronically, chronically ill, but for us sufferers that get about in our wheel chairs, are only bedridden 50% of the week we will be far, far, far down the list. My neurologist admitted that all his multiple sclerosis sufferers would get it first before GBS/CIDP as their need is greater. After spending three months in bed there recently I’m not even sure what qualifies for the greater need.
Anyway that felt good to get of my chest. Do not accept the supposed ‘norms’ thrust upon us by the newpapers and media. If there is a medicine out there that can help you or me then we should be on them, hoping that each new medicine could be the one. if you are an older gentleman get your testosterone levels checked out. if they’re too low then accept the HRT you are given and hope it helps you condition in other ways.
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AnonymousJanuary 14, 2007 at 9:40 pm
My neuro has suggested that steroids might help lengthen the effective time of the IViG and, most optimistically,could eventually end the need for IViG. I’m willing to give it a try, even with the expected side effects of hyperactivity and weight gain, but would like to hear anyone’s experience or input on this treatment.
Right now I get about 4-5 weeks of good results from the IViG and get my infusions about every 8 weeks,by my choice because I don;t want to do it every month.
Thanks in advance for your help.
AnonymousJanuary 14, 2007 at 10:28 pm
I would avoid the steroids if at all possible. That’s great that you can go as long as 8 weeks between infusions, I have issues if I am just a few days late and I get it monthly/every 4 weeks. I have been on Prednisone 3+ years in addition to the IVIG, if I got to choose I would take IVIG every time. Weight gain is just one of many issues that steroids can cause.
How long have you been getting IVIG?? I know that long-term, (years not months) of IVIG can cause issues. I wonder if the IVIG cost is the issue? Also did he discuss any other immunosuppressants possibly instead of steroids?
AnonymousJanuary 15, 2007 at 9:12 am
I remember you from our old forum. I was on steroids for about four years. I’m not on them now and I would NOT willingly go back on them. The round moon face and puffyness did not bother me because I don’t have a scrap of vanity in me, but I SUFFERED with severe heartburn. Many nights I could not sleep and had to sit up to try to find relief. I now have ulcers, bled for two days and in the hospital for six days (two pints of blood infused) and I believe that ulcers like that came from the steroids.
Steroids are extremely hard to get off of, you have to be weaned very very slow. It took one failed attempt and a year to get me off.
AnonymousJanuary 15, 2007 at 11:48 am
My husband is on steroids 60 mg a day since a year now, will start to take them off soon since they are not doing anything good for him, just side effects. He’s got to take 3 other types of pills to minimise the side effects but lately it’s not enough bone wise and stomach wise. I wonder as Jerimy said isn’t the money the issue for the IVIG? Prednisone is a very cheap drug , I’m sure they would prefer you to take the cheapest option of your treatment. The choice is yours but I wouldn’t change the IVIG for prednisone. Good luck and speedy recovery.
AnonymousJanuary 15, 2007 at 2:05 pm
Hi! I was prescribed Prednisone two months after my first IVIG and when symptoms recurred. Prevacid was also prescribed to prevent stomach bleeds. Prednisone made me jumpy, and Prevacid KILLED my stomach! After a few days of Prevacid, I stopped taking them and went back to OTC Tagamet which I had taken for years due to previous ulcer. The Prednisone didn’t prevent my CIDP symptoms from recurring – once again had to have a 5 day infusion (this time as outpatient). Finally weaned myself off Prednisone and will not take again. Also had to take extra calcium because of possible bone damage due to steroids – not worth it! My neurologist and I are planning 1-2 IVIG treatments every 4-6 weeks to see if this will extend non-symptoms. Don’t know what to call this period – “remission”? Good luck and best of health!
AnonymousJanuary 15, 2007 at 5:21 pm
I would like to add one thing to the others responses.
This is info that anyone with diabetes should know. Any steroids can cause your blood sugar levels to rise very quickly and go out of control. So if anyone is diabetic be extremely careful with steroids.
I also would like to add that anyone who is diabetic, never take an IVIG that is sucrose based, it can shut your kidneys down in a very quick time period.
January 15, 2007 at 6:26 pm
And then there are the lucky patients like me.
I have only been treated with prednisone for the past 5 years. (Never had IVIG.) I started at 60 mg a day for the first two weeks after my CIDP diagnosis and then slowly dropped the dosage. Now it goes up and down from 25 mg every other day to 15 mg depending on my symptoms – which depend on how well I stay away from people sick with a virus.
Yes, I have my eyes checked regularly for glaucoma and cataracts; yes, I take extra calcium (which my family doctor suggests anyway since I am an older female); yes, I watch what and when I eat to keep the prednisone from upsetting my tummy; and yes, I have put on about 30 pounds which just will not go way.
Not all people get all, or even any, of the notorious side effects. You need to talk with your doctor about your concerns and his plans to monitor you. Here are 2 excellent web sites about prednisone that will help you understand the side effects.
Prednisone is working for me right now. When I need different treatment to keep my symptoms at bay my neurologist and I have the other options.
AnonymousJanuary 15, 2007 at 9:08 pm
Emily was started on oral Prednisone back in December. The dr has increased her dosage from 5mg’s a day to 15 mg’s a day. Going up by 5 mg’s at a time.
I’m not really happy about her being on it. I feel like I was bullied into it because the new neuro refuses to give her IVIG once every 10 days, which is what she needs to maintain her eye. (It used to be IVIG twice a week but the new neuro took her off of the IVIG for a month & at 12 days her right eye started to relapse)
Eventhough she’s on a relatively low dose & hasn’t been on it long I can see some of the side effects with her. She MUST take it before 3pm or she cannot go to sleep at night. (she took it late tonight & she’s up an hour later than usual & still going) She’s getting a little belly too. She’s always been a skinny minny so I’m concerned about that. She has “roid rages” as we call them where she gets really upset & starts crying over no reason. That’s a whole lot of fun (roll eyes here). She also hungry constantly & that has been a battle.
If it were me I’d want to stay on the IVIG as long as your health is not at risk with it.
AnonymousJanuary 15, 2007 at 11:29 pm
Thanks for the input. I can say that my Dr. is not recommending this because of the cost of the IViG and he has been extremely detailed about the side effects. I think because my CIDP is not too bad and there is an axonal component, that he believes this is worth a try. I have my IViG the next 3 days and then I will talk to the doc about the steroids.
Still not sure and will certainly discuss all of your information with the family and the doctor.
AnonymousJanuary 16, 2007 at 12:03 am
[QUOTE=jcrone]All of the steriod users seem to be taking them orally. Anyone out there getting them via IV? I go in weekly for my Solumedrol (1000mg) infusion. So far so good.[/QUOTE]
I began my treatments with 3 consecutive 1 gram doses of Solumedrol IV on a Thurs, Fri, Saurday which were followed with 4 treatments one week apart and then 4 treatments 2 weeks apart. However, having started 60 mg of Prednizone daily, I skipped my 3rd (2 week apart treatment)… My concern is that I not over do it…. so I’m waiting to see how I do on the oral application. I have a prescription of Cellcept on hand waiting to take blood tests (for monitoring). Overall, I believe the Solumedrol was a great treatment for me… I’m not sure how long one can or should take it…. I’m told that it is not good to take the Steroids long term…. it will be interesting to see how they regulate me without overdoing my treatments….
Glad to hear they’re helping you… for me they were a Godsend.
AnonymousJanuary 17, 2007 at 9:19 pm
I went two years trying the various invasive/low side effect options such as IVIG and Plasma Exchange without any relief. I was put on Prednisone and within a couple of months my symptoms became more manageable. I had very few side effects in the 11 months I was on them. No weight gain or other major symptoms. Occasional insomnia (a few nights a week), thinning skin, acne-like skin rash, some bone loss. I am glad to be off them, but the trade for added sensation and mobility was worth it.
January 23, 2007 at 8:11 am
I’m coming off the solumedrol iv treatments, couldn’t handle the way it made me feel. I was either ready to tear someone’s head off or ready to cry, I can’t take anti depressants so life was horrible. Also my bone density kept getting worse and I was taking the max on suppliments. Going back to the IVIg, every 4 weeks with cellcept daily. Steriods are cheap but the side effects for long term use just wasn’t worth it for me.
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