CIDP, IV Methylprednisolone, Utter Frustration and in Need of Help!!
AnonymousMarch 19, 2009 at 11:55 pm
Hi Don and all,
It has been awhile since I have posted, but I read and search the blogs for info all the time. I was diagnosed with CIDP about 5 years ago. I tried IVIG for over a year, but it never truly helped me. Given the cost and time commitment I gave up on it. The results just weren’t there for me.
I tried Cellcept, but after several results it didn’t change much. In the meantime, my pain level soared and nothing much was helping. That’s when I switched to oral Prednisone. I started at 60mg/day. I felt better almost immediately. My CRP and Sed rates came down (markers of inflammation). I was less fatigued. Pain was less. It really felt great to be able to lead a more normal life.
But, my Doctor was afraid to leave me on Prednisone for long-term therapy. The drug was not designed for that purpose. I did gain weight and my face did get kind of puffy. I started cutting back my dose. Almost immediately, my symptoms came back. Now I am at 7.5mg a day and have all my problems back.
I just started IV Methylprednisolone 500mg this week. The plan is for me to have it once a week. So far, I do feel a little irritable. My pain is pretty widespread and my energy is non-existent. But, I have only done it once. Is this something that takes time? It’s confusing to me because oral Pred. was so fast acting. I guess I just don’t know what to expect. I did see a drop in my Sed rate today. Maybe you just have to be very patient with the IV version.
Have any of you heard of or tried Cymbalta. It is supposed to help with pain and anxiety. There have been studies that indicate it could really help with Fibromyalgia/ CIDP pain. My Doctor asked me to consider it. I just wondered if any of you had experience with it.
I guess I am just having a down day and need to write to people that understand. It’s just so hard to feel crappy every day. I know that it could be worst, but that knowledge isn’t helping much today. I just want to wake up without pain and have a really productive day. Instead, I watch the clock so I can know when I can finally take more pain meds.
I am also seeing that stress can really cause flare-ups! My husband got laid off from his job in November. He can’t find anything! Plus, he just came home from the hospital after having hip replacement surgery. It just couldn’t be put off anymore. Plus, our insurance is over the end of the month. From then on we will be paying for it ourselves. I guess we will pay for it from his unemployment checks! He can’t get around yet, which means a lot more stuff for me to do. Assisting him is just throwing me over the edge!
The poor guy is doing really well considering his circumstances and that’s all I can do is feel bitchy. Now, I have to go get the newspaper, feed the dog in the AM, water outside, take in trash cans, etc, etc, etc. Bring him drinks, fix meals, answer phones, help him dress, get him toilet paper, etc, etc, etc.
BOY, I REALLY DO NEED TO VENT!!!! I honestly feel like I am going to explode. I know that my husband doesn’t get it. I also know that most of you probably do. Please post back so I have a chance at avoiding a stroke! Just knowing somebody understands will really help me.
By the way, my muscle cramps went way down when I added Potassium. (K-Dur 20 meg) I found that if you can keep it up around 4.0 that will eliminate spasms and cramps. Please check it out because they really hurt.
Thanks for giving me a place to post my feelings. A place where I won’t be judged too harshly.
Best to all of you,
AnonymousMarch 20, 2009 at 3:37 am
I get it Sandila. Most of the time I keep pretty even emotionally but sometimes I just want to scream because no matter how much somebody loves me – they still don’t understand what its like to be miserable all the time and still have to put up a good face and get things done – assuming I can get out of the chair to begin with. And frankly this is exactly what is driving me crazy right now too – I think Spring Fever is aggravating my need to feel productive and thus bringing up all those feelings of being worthless because I am not able to do as much as I want. I go through this every Spring when I want to be out making my yard beautiful and cleaning my house from top to bottom like I used to do. And while it’s not fair of me to expect my husband to take over all the things I used to do – that doesn’t help my need to have them magically done. Hopefully I won’t beat myself up over this too much longer, it does help knowing others are going through similar things. 😮
P.S. I went through about a month of my husband being really sick last summer – to the point that I had to do almost everything around the house, like you, and it was super hard. I had been doing pretty well CIDP-wise but the added stress of caring for my husband etc. set me back a bit. All I can say is – marriage is for better or worse – sometimes you are the one who is worse, sometimes he is. It’s hard but do the best you can, it’s short term pain for long term gain. When he is better he will be better able to help you and take care of the house. Don’t be afraid to ask for outside help either – Boy and Girl Scouts seem to be itching for things to do around here… as do kids on Spring Break… I’ve got a long list of “chores” kids can do for extra spending money, some of them actually get done too. 😉
AnonymousMarch 20, 2009 at 4:04 am
Sandila, Vent as much as you need to!! I am also on oral pred, with about the same results as you, and my dr doesn’t want me on it for long term either. I was given meth=pred iv mega dose recently while I was in the hospital, It worked nicely, it took a few days to kick in, but when it did it was a welcomed feeling. Hopefully you will see good results soon.
Is there anyone who can lend a hand to help care for your hubby, or at least help you with the chores around the house? It sounds like you have your hands full and you need to destress. My hubby was laid off 2 yrs ago and is currently job searching also. I’m worried about you, Hun. Stress can do more harm then good to a body. Can you call your church or local community help organization for alittle assistance with the things you have trouble doing? You need to take care of your needs as well as caring for your hubby. Get plenty of rest.
If you do a search for cymbalta at the top of the page, you will find a number of posts on the subject. Just remember everyone is different and everyone reacts differently to meds. This is an individual syndrome, but is more alike then we know. I hope Your Hubby recovers quickly. You both are in My Prayers and Thoughts.
March 20, 2009 at 11:44 am
I totally understand your need to vent. I do not even have cidp or gbs, my 12 y/o son does and the people on this site are so supportive of my venting. (Even though it must sound awful and complaining since I am well) About the Cymbalta, from my reading of the people on the site that take it and their reactions, I would say as Cheryl did, everyone is different. You can only know if it works for you if you try it. some people seem to get great results while others got off of it very quickly. I hope your husband recooperates quickly so that things will be easier for you. From a caregivers point of view, you mention that he doesn’t get it. I think he just is sad himself. I guarantee you he feels guilty about you having to take care of him in light of your condition. I bet his not getting it may just be a mechanism he is using to not show his feelings. He is angry about his job, insurance, your illness and now the burden he is putting on you. when my son sees that I am stressed with the things I have to do plus tend to his medical needs and then he sees me in pain with my herniated discs or degenerative arthritis, he seems to get mad and crabby. I think it is because he feels guilty that I have to do so many things for him. Honestly, I think guys just have a more difficult time expressing themselves and it just comes out as anger or “not getting it” I hope the new spring season will bring new happy times to you and your family. I will pray for you guys!
About your cidp, do you have the progressive kind? Have you ever done pp in conjunction with the other treatments? I agree with your doc that you cannot be on prednisone forever, however, if you have tried all other options and combinations of options, there comes a point where you have to weigh the risks and benefits and decide what will help you have the best quality of life. Such a difficult decision. Best wishes to you and your husband. I am thinking about you.
Dawn Kevies mom
AnonymousMarch 20, 2009 at 4:23 pm
Yep life is tough at times for sure and sometimes it takes all your strength just to hang in there! Every day is another day and to help me get thru the darkest times i always thought about how i could be worse off in other ways!!!! You really dont have to look too far to find others worse off – not to negate from your current situation but to help you thru this bad patch!! As you will know we are all responding differently to treatments etc but i thought i would add comment and hopefully give you some hope to hang in there as i have been and still am on methylpred iv. Long story short – had symptoms and early diagnoises May 07 started on the first line treatments (ivig – relapsed and deteriorated, then twice weekly ivig and o pred – relapsed and deteriorated to quad status with autonomic weakness as well, then we started the high dose methylpred 500mg weekly + immunosuppressant, + twice weekly ivig. Since then a few small setbacks but only as we tried weaning treatments etc. All in all progress has seemed slow (as soon as i could walk i wanted to be running etc!!) but i have made great progress. Would say I am 95% back to normal, am currently on iv methylpred 250mg a fortnight, weekly ivig, + methotrexate.
As you mention cost as a factor etc Dr Parry recently released a study on oral pulse steriods and it is a very cheap form of treatment that is showing great results. Is considered pretty much on a par as the iv pulse treatments. Maybe that is something you could look into?
Once I started on the 3 forms of treatment (Oct 97) progress was definately very slow and difficult to gauge, although i could see improvement if i compared things weekly or fortnightly, ie last monday i couldnt do a button up, whereas the next monday (or fortnight later) I could!
All the best and hope things start going your way real soon.
AnonymousMarch 20, 2009 at 6:17 pm
😮 Hi Sandila,
“Ditto” …What the others have said.
I totally hear you,my life and house are so upside down
since I’ve gotten this disease it’s crazy! I try to stay positive
but am lucky to just be sane. I am on Cymbalta and have
done fine with it, I also take Topamax and the combination
seems to work for me along with my IVIG every 3 weeks.
Although, I have been getting weaker and my nerve damage
seems to be moving up further so perhaps it’s not working
as well as it has in the past…it’s been 2 1/2 years. Anywhoo,
good luck with your treatments and hang in there!
AnonymousMarch 22, 2009 at 11:34 pm
Glad you can be so honest and real. You deserve a place to just let it go and that is what this forum is for. Keep us posted on how you’re doing. Between just bitching as needed and letting go of some of the “things to do” lists, I always find I feel a bit better. Hang in.
AnonymousMarch 23, 2009 at 2:26 pm
Don’t worry about venting, this is the place to do it. At times we all need a place to yell or a shoulder to cry on. I’ll think you’ll find everybody here is very supportive. Many of us are in the same boat.
I’ve been on Cymbalta for about five months. So far it’s been effective for me. I think you’ll find others on this site who have not had the same experience. Each of us seems to respond differently to the same drug. From what you described of your husband symptoms Cymbalta is definitely worth a try. It may work for him and then again it may not, but it’s worth a try. You may even be able to get help from the pharmaceutical company to pay for.
Please keep us informed of how things are going. You and your family will be in my prayers.
AnonymousMarch 23, 2009 at 9:15 pm
I would like to join everyone else in wishing you encouragement and strength in these challenging times for you and your husband.
I think steroids act two ways–to settle down the inflammation and the flu-like achiness from inflammation (reflected in reduction in the ESR and CRP) and, second, to stop the ongoing damage. These are linked but it seems like the first is manifestations of the process in the body away from the immediate area and the second is what happens right on the nerves. Since you started steroids at a moderately high dose before–it probably affected both areas, but over time and with less steroids, the effect is less. The high dose steroids may work, but since you have already been on lower dose steroids, the rate of working–especially on the manifestations of this may be “slower” to show up. this does not mean that it is not helping the underlying process, just that the immediate feel better might be a good deal less. I would suggest to give the high dose IV steroids at least three times to work before getting discouraged. It also takes longer and more to settle down a flare than to keep things steady at non-flair times.
Please be careful to not stop steroids suddenly if you have been on them for more than a month–your body has to get used to making its own steroids again. Weekly steroids does not replace the daily need for steroids in times of stress.
Cymbalta helps my pain in my feet a lot. I have been on it almost a year.
Part of the stress of caregiving is the need to always “do” things and we need to rest. Women and men often have a different list of what really needs to be done at a house. when you shared chores, most of both what your husband felt needed to be done and what you felt needed to be done was probably able to be accomplished. Now is harded. As much as possible, try to ignore things that are not “necessary” to do in the next month or two or three. Making a new couple schedule might help–such that sometimes in the morning, he will feed the dog and that you will go get the paper but only after resting thirty minutes after finishing breakfast or whatever–to space things out and to share chores as you both can. Also schedule companionable stillness into the afternoon–where both of you sit down and rest and talk or watch something on TV or listen to music. Something that is restful to both and in which time you do not run around doing things. It will help you and the both of you.
If people ask if they can help, suggest to them little tasks. One of my neighbors, bless him, brings my trash cans up to the top of the driveway each week. He takes his back to their place and then brings mine back from the end of the driveway. It probably only takes a few minutes each week, but it helps me so much. Someone might do that or bring the paper to the porch, etc. Having people come visit might help your husband a lot as well. It really must be hard to not have work to go to and to be physically limited all in such a short time. Although you have come to live with your limitations in the past 5 years (with whatever peace or not that you have about that), it still is a little different when the physical limitations are new and, hopefully for him, temporary. He is not you and you are not him. Both of you feel and need different things. You, right now, need to help take care of yourself as you also help to care for him.
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