still struggling

Sorry to hear you are not doing well Jeff.

You mentioned that the doctors were talking about disability. Is it possible for you to go on disability to recharge your batteries? Some people can go off for 6 months or a year and then return back to work.

You mentioned that you are very fatigued and that your wife needs a break.
Can you do something special for each other to help you get through this rough time?

Take care,

Rhonda from Canada

Jeff,
I am so sorry you are having to struggle with an added “bonus”. I hate the old, “we don’t know why this is happening but…” and then juggling the symptoms of CIDP and this new kettle of fish is so so draining. Listen, as you know when I had to go on disability it was one of the hardest things to deal with emotionally and the process is not fun, but after three years now I can honestly say that more than the drug treatment, the lack of day to day strain with no recovery time in between has been a bigger component to my getting better. I know it is not a quick decision but if any doctor has suggested it I would encourage you to seriously consider. Besides my relapsing less I now have a pretty great life of doing only what feels good which now includes a bit of house cleaning, cooking and kinda being the home care taker. This really makes my wife happy because she gets to come home to a happier me and a hot dinner! We are actually both a lot better off despite the financial hit we took. It really has been worth it. I am certainly sending you good thoughts and hope that you get all that you need and deserve.
Be well,
Linda

Jeff, I will pray for you.

Father, please protect Jeff from the heart inflammation when he goes off the predinsone. Please give Jeff and his wife (& all of our caregivers) strength, encouragement, rest and peace. Please give Jeff’s docs wisdom, discernment, and to be at the top of their skills and knowledge as well as all of our doctors.

Peace in Christ,

Gary

Jeff,

Sorry these problems have been so rough on you and your wife.

Amen to Garys prayer for you and your wife.
Will continue to pray for you and your wife.
Shirley

Sorry to hear this Jeff. Hope things improve for you very soon….we will all be thinking of you and your wife. Please keep us posted and hang in there.

Hi Jeff,
So sorry to hear things are not going well. We will pray for you! What new drugs does the doc want to try? Have you done anything else besides the prednisone? How about the prednisone w/ivig, plus the ivig might help with the infection. Erin posted an interesting thread about loe dose nalterxene, it too sounds interesting. Pam H has had wonderful results with cytoxan as well, Ryan is responding favorably. Good luck to you and your wife!

Best wishes to you Jeff and I pray for better days ahead for you.

Stacey

Hi Jeff,
I am praying for you and your wife during these difficult times, and asking that you trust in God to help you make the right decisions and choices in your life, and that your health will improve. I will ask for triple blessings to be sent your way.

Jeff – I offer my prayers for you too. Your posts offer such good information – now the best I can offer to you is a prayer and a good thought.

Have you checked on respite care for a week? Pwbooks

Jeff, You have always been the strong one for so many of us here. Now its time to listen to some of your own words! I understand the need to wait for full SS. Hopefully our prayers will get you through the next year. Sending you thoughts of good health!

Jeff –

You and your wonderful wife are in my prayers. My sister has struggled with Lupus (also autoimmune) for years and has done a bunch of research on GBS since I joined the club in December ’09. Last fall her research suggested – and her rhuminologist agreed – that she should try a gluten free diet. She is now feeling better than she has in over 17 years. As a result I researched gluten free diets and determined there seemed to be a real connection between gluten and autoimmune issues. So, hubby and I are now gluten free – for about 3 weeks. He has more energy than he has for several years and my recovery is moving along rather quickly. Gluten free may be the answer. I can’t swear to it, but it hasn’t hurt us and we both feel better. Might be something to consider – – –

My very best to you. Prednisone is a great durg when you need it, but hard to get off of – and does have some wierd side effects. Been there, done that, got the t-shirt. As I said, you are in my prayers.

Cathie

HI Jeff and HI Cathie!
Jeff I hope you get better and find the right meds for your GBS and that you get what you need for the pain. I know you will get better and I admire your attitude. You are always looking for solultion and I know you will find them.
You seem to have the capacity to tolerate what is not tolerable and that is a gift. You are in my prayers with triple blessings!

And to Cathie,
I have been on a gluten free diet now for quite a while. It happened by default. I am diabetic and prednisone is known to raise blood sugar and not only that it causes weight gain.
I was fighting fat and sugar and gave up bread, potatoes(sweet potatoes, nutritious and delicious), beans, rice. pasta, corn, bananas and squash.
First I realized I was basically on the Zone diet and then I realized I was not eating gluten.
I started feeling better and looked into celiac disease more closely and did not have any classic symptoms nor I have ever been tested. But the more I avoided gluten ( it’s also in some condiments and all sorts of things) the better I felt.
The doctor gave me something for my stomach when I first started the prednisone, but I never needed it at all. The pharmacist told me to eat something when I take it. I coated my stomach with olive oil and other oils I take and ate a bite with each dose. Sometime I eat a little sauerkraut on the days I take the prednisone, because sauerkraut soothes my stomach, but I don’t eat it that often.
You need to eat gluten before you get tested and the top of the line test is an intestinal biopsy. I prefer to just go gluten-free because I’m feeling so and I eat a great balanced diet with protein, fiber, vegetables, some fruits and yogurt, cheese, and sour cream for dairy.
I am taking the prednisone now every other day and my sugar control is excellent. Someday I may get tested for celiac disease.

Hi, Jeff, I have just a few things maybe for you and your team to consider.

First for pain, since you have to stop OxyContin, have you ever tried MS Contin or a fentanyl patch? Both give sustained pain medication. Another one that lots of people do not think about is methadone–in part because it has been associated with drug withdrawal management, but it is really a good pain drug–with a long, sustained half-life. The long half-life helps that pain managment is stable and also it is more “livable” meaning that it can help people to keep living life–it does not have as much ups and downs or as much sleepiness or changes in how you feel. I have seen very good success with kids with chronic pain on methadone.

Second, regarding pain, additional medications like Cymbalta might help with the neuropathy pain. Lyrica did not work for me, but Cymbalta made a big difference. Lyrica is a cousin drug to Neurontin. At the support group that I attend, the neurologist argues that there is no maximum dose of Neurontin. They have only studied it up to a dose of 3600 mg/day and many people have no added benefit after a moderately high dosage is reached, but some people do report added benefit as the dose is raised to the higher levels. Like any medication, one has to balance with side effects and also it is best to not raise the dose too rapidly.

Regarding steroids–as you know, these have good and bad effects and the balance of this is very, very dose dependent. People want to get off steroids rapidly because high doses of steroids have serious side effects. Lower doses do not have so much badness. Often it is very important for an autoimmune illness to be slow and gentle with tapering steroids so that there is not that flair. If you have done pretty well on prednisone 5 or 10 mg a day, for example, taper rather more rapidly down to this level and then stay on that for a couple of weeks and then start tapering every other day–also very slowly. Prednisone 5 mg a day is basically replacement for what your body makes (the exact replacement dose depends on your size–height and weight). I have seen tapering work on the every other day plan when it fails on the daily plan and every other day steroids are much less “toxic” to the body–less effect on bones, glucose, ability to handle stress, etc. I have seen this work when straight daily tapering did not. The other option is pulse steroids–such as weekly “high” doses. This is associated with much fewer side effects, but may suppress the autoimmune response well. Some people use this for CIDP with good results when the daily doses did not work for them. It is also used to bad problems associated with lupus, for example. A lot of the kids I help to care for get pulse steroids (decadron po once a month over 4-5 days) to control their neurologic autoimmune disease. Four days a month, they may be moody, but it is not as hard on them as the sustained daily or even every other day steroids and, obviously, works.

The biggest point of steroids–to emphasize again–is to try to get the disease controlled on as low a dose as seems reasonable and then to gently taper from there–being really, really slow at the end. The every other day tapers from 5 mg daily prednisone might be as slow as dropping one mg every week–for example 5 mg alternated with 4 mg on alternating days for a week (or over 6 days to make it even), then 5 mg alternated with 3 mg for a week, then 5 mg alternated with 2 for a week, then 5 mg alternated with 1 for a week or two, then 5 mg every other day for a week or two, then 4 mg every other day for a week, then 3 mg every other day for a week, etc. It may take 2-3 months, but it is low dose and it is gentle. I explain it as sneaking out the back door so that the autoimmune disease does not notice that the steroids are being withdrawn.
The point is that if there is a flair, all the inflammatory cells get excited and the vicious cycles gets going again. If there is not flair, there is plenty of time for healing as well as for all to stay settled down.

Last question/suggestion. Have you been tried on indomethacin? It something helps with pericarditis and other autoimmune/rheumatologic problems as well as pain. Personally, this is managing symptoms and steroids (despite their potential to do harm) may actually work to settle down the disease, so if it were me, I would want something that might help the underlying diseases like maybe even pulse weekly or biweekly steroids and as second choice maybe the slow gently taper because this may also settle disease down. Pericarditis with the pain associated is easier to tell promptly if there is a flair and with nerves, one has to have enough damage accumulate to know something is not working well enough–so it is harder to manage when the disease is smoldering/lower grade but still active.

I hope that something is found to help settle both autoimmune processes down and that you get stronger.
WithHope

Jeff,
I am so with you on this struggle. Just know that.
All my best,
Linda