BryanF
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January 3, 2021 at 6:21 pm
Haven’t posted in awhile, but I have this same issue. My CIDP is seemingly getting better, but then I get horrible back pain and spasms. Of course it makes it difficult to function and my strength is affected. Also, when my back acts up, my CIDP seems to get worse.
My GP did some blood tests and my sedimentation levels were extremely high. If I have it right, cancer, arthritis, and auto immune diseases can cause high levels of inflammation.
My GP gave me a pack of prednisone and a muscle relaxer that lowers inflammation. Both seemed to have helped immensely.
Definitely seems like there is a missing element in our treatments.
June 4, 2020 at 10:14 pmI wish I could offer you some hope, but I’ve been dealing with this since January 2017.
On my good days, I’m 85% of my old self, but mostly I hover around 60-70%.
I go to work everyday. Lifting is chore and when I get home, I’m exhausted most of the time and go to bed by 7 or 8 pm.
And, it always seems like there are setbacks. Anytime I get sick or hurt, it seems like my immune system kicks in and my CIDP symptoms flair up.
My strength and stamina are still way below where they should be and I get winded at times.
On my off days, I’m a zombie and my body just needs to recover.
I just can’t imagine how this will turn out as I age.
June 4, 2020 at 10:07 pmThe prednisone that I’ve taking for 3 years has done a number on my bone density. Last May, 3 of my vertebrae shattered. I’m on Fosimax now, but the shattered vertebrae did a number on my recovery and I’m still living with the after effects.
I can’t lie flat in bed, so I sleep in a lounge chair, I haven’t recovered my strength and the vertebrae still seem to cause back spasms at times.
So to everyone out there, keep this in mind.
June 4, 2020 at 10:03 pmMy symptoms go back and forth. There are a few rare days when I feel like 85% of my old self and other days where I have numbness and it feels like I have wooden legs. Just don’t let it progress too far….
March 3, 2020 at 9:54 pmEvery time I’ve gotten sick since I’ve got CIDP, my symptoms have gotten worse. The prednisone and Imuran I’m taking are supposed to suppress my immune system. When you get sick, your immune system kicks in gear.
As Jim notes, bottom line, yes your CIDP can get worse during an illness.
I can hardly wait for the Corona virus to hit my area ; ). In all seriousness, I am a bit concerned how people with CIDP will be affected by Wuhan special.
January 21, 2020 at 8:31 pmSorry to hear about your accident. I hope you have a speedy recovery.
November 4, 2019 at 6:49 pmI know CIDP has affected both my urination and bowel movements. While I don’t have incontinence,urination wise, when I have to go, I really have to go right now. Very annoying, but it seems to be glacially improving. Also, I urinate a lot, though maybe the Prednisone has something to do with it?
As to bowel movements. Since I got CIDP, it seems like my colon lacks the ability (weak bowel muscles?) to effectively move the stool out. So my morning goes like this. Sit on the toilet, have a small bowel movement. Still feels like I need to go, but nothing. So I get up, brush my teeth, shave, move around a little and sure enough, I need to go again. And if I’m really lucky, I get to repeat the process again.
On really bad days, that might happen 5 times. At the point, I take something to now stop the bowel movements and I’m back to square one….
My guess is that the CIDP somehow hoses impulse nerves in the colon and it just doesn’t work like it should.
I hold out hope that as I improve with the CIDP, things get better downstairs as well.
July 16, 2019 at 10:38 pmcer100, I think we are in the same boat. I remember the first few times I received IVig. It was a miracle drug!
But with weekly doses, I think it maintains my condition. Maybe this is as far as I recover.
I did start Imuran in May. It supposedly takes 6 months to build up in one’s system and for you to see maximum results.
Right now, I feel a bit better, so I have some hope that things will improve a bit more.
July 16, 2019 at 10:28 pmI have a Dexascan on Aug 1st and then an infusion of some medicine to strengthen my bones a week later (assuming the scan shows bone density loss).
July 13, 2019 at 10:57 amUnfortunately, that’s the down side of the chronic part of our disease. It could be that you’ve stopped responding to IVig, or it could be, like me, you get periods where the CIDP acts up.
My theory is that when our CIDP acts up, it overwhelms the medicine we are on. In my case, around last year at this time, out of the blue, my symptoms started returning. Not to the point of not being able to walk, but numbness, weakness, lack of energy and so on.
It has taken almost a year to shake that off. The IVig, I’m sure has kept the worst of the symptoms at bay.
With that being said, my neurologist started me on Imuran in April, and that combined with the IVig has, I think, slowly reduced my symptoms.
In other words, see if your doctor will add another medicine to help you combat your current symptoms.
July 12, 2019 at 12:34 pmMy two cents is to go get a second opinion. I’d be vigilant in the meantime to make sure your symptoms are not returning.
June 14, 2019 at 7:19 pmHey Barb and Fellowcidpguy,
My symptoms flared up in July of 2018. As a result, my Neurologist at first upped my prednisone to 60mg a day. That really did nothing. So in September, he added 10ml to my biweekly IVIg treatment. That actually seemed to help.
But in February, I was still suffering from numbness in my forearms, hands, and calfs. I’m now taking 100ml treatments weekly and in early May, I started on Imuran in the hopes of getting off steroids.
Unfortunately, in late April I somehow fractured to vertebrae. The consensus is that the Prednisone had weakened my bones, thus causing my vertebrae to be easily broking.
I had so much pain from the vertebrae, I couldn’t really tell the difference between the broken bone and CIPD pain.
With my back now healing, I think I can report that the Imuran seems to be helping. Not sure of the efficacy of weekly IVIg treatments, but at least this week I feel better and the CIDP pain seems restricted from the ankles on down.
Bryan
June 14, 2019 at 7:08 pmI’ve been at this for 2 years now.
I’ve been on Prednisone for 2 years. Most of last summer, I was taking 60mg as my CIDP symptoms were acting up. Right now I’m down to 17.5mg.
The bad thing about Prednisone is that it can weaken your bones. As a result, two of my vertebrae were found to be fractured and that has caused me a great amount of pain over the last month.
I’m temporarily receiving IVIg weekly (to see if the nerve pain/numbness and weakness in my arms, hands, calfs, and feet could be dialed down) and I started Imuran in May.
The good news is that I think the Imuran is actually working. The numbness in my fingers and forearms has receded and the weakness and numbness in my calfs seems to be gone, leaving the neuropathy only in ankles and feet. Additionally, I don’t feel as tired and exhausted and actually have a bit of energy.
So once my vertebrae heal, I actually think I’ll be on the upswing. That last year has been painful and a challenge and I truly hope the Imuran continues to make me feel better.
Bryan
May 5, 2019 at 4:55 pmThank you Cer100 and Jim for responding.👍🏼
May 4, 2019 at 7:02 pmSo the specialist wants to start me on Imuran and wean me off the prednisone. We will continue the IViG treatments.
Anyone here have any experience with Imuran?
