Lupus and CIDP

Hi, just been diagnosed with CIDP as well as lupus. Going in for intravenous immunoglobulin infusion, n just wondered if anyone else was in the same boat?

[tremarel]

Yeah I have CIPD as well as lupus. I've been on immunoglobulin infusions for seven years now. I started on a low dose & had to increase over the years. .How did they find out you had it & were you having any symptoms ? I was having urine infections all the time & was always covered in shingles. As soon as I started on the infusions it all got better but as of late I have started getting more infections. Please let me know how you're doing. Very interesting as I haven't heard of anyone else. I also have fibromyalgia & a muscle problem called neuromyotonia. Oh & I'm a kidney transplant patient caused from lupus. I had the transplant off my Dad seventeen years ago.

All the best Hayley

[megs_tom in reply to tremarel]

I have just googled neuromyotonia as didnt know what it was and I experience these symptoms too. How did you get that diagnosed? Xxx

[tremarel in reply to megs_tom]

Hiya Megs I started with spasms & my bicep muscle got bigger & harder. I also had a lot of firing of nerves throughout my body which was very painful. The neurologist organised some tests, ie, nerve conduction tests & EEG's. This is where they stick needles into the muscles to see how much activity is going on. Mine was going berserk, firing like hell. I tried various drug treatment but didn't like the side effects I also had plasma exchange. I don't take much for this now only painkillers when its really bad. It's such a strange disease. If I cough, sneeze or I'm spooked my upper body goes into spasm & it takes a while to calm down I also find walking & moving my legs they go stiff & just don't want to move, my tummy muscles also go hard now. I hope this is of some help to you.

Take care Hayley x

[megs_tom in reply to tremarel]

Thanks. I get really sore muscles in my calves and thighs where it feels like ive pulled the muscle. I also get twitches throughout my body and I get painful spasms up my arms too. Actually I have them in my legs too, normally when in bed. I often get like these shooting pains that feel like electric! I seem to have bother controlling my body temp and even at a slpw walk I can be drenched in sweat in 5 mins!! Xxx

[tremarel in reply to megs_tom]

Gosh it does sound very familiar Megs.You do feel a lot of movement & twitches & the muscles go tight. It does feel like electric shock sometimes, I get that into my head and as for sweating I'm always drenched in sweat, more so when I move & also if I get nervous & sressed about something like if I'm going out to meet someone or if I'm with a lot of people.. It's horrible. Have you been diagnosed with anything yet ? Please keep in touch, let me know how you're doing & if they diagnose neuromyotonia.

Take care Hayley x

[megs_tom in reply to tremarel]

Yes feeling anxious and being around a lot people tends to bring on the sweating too, it is awful!! I also often get this feeling in my calves/thigh/whole leg that my muscle is tense even though I am not physically tensing it and it takes a long time and a lot of concentration to relax it!! I never realised this set of symptoms had a name, I just assumed everyone got them who has an auto immune condition. I have not had a diagnosis, however rheumie suspects mild lupus (dont know where she gets mild from as it doesnt feel particularly mild to me!) Thanks, I will let you know how I get on with it. Though my next rheumie app is not til july now xxxx

[Hidden]

Hi Hayley, thanku so much for the really interesting reply. 3 yrs ago I suddenly started tripping up and after realising it was because I couldn't lift my lt foot up. I had all the tests and the cons finally decided I had entrapment of the nerve causing paralysis. Three mths later the other leg went the same way. Still same diagnosis, mainly bec I am v thin and they thought the fat pads had gone that protect the nerves.

No change, regular rvs by neurologists and lupus consultants, tweaking of immunosuppressants but nothing new.

Last yr however I had the worst yr ever with profound debilitating fatigue and in oct another nerve in rt leg became paralysised. This time the neurologist panicked as this nerve can't be trapped due to its position. More tests and they confirmed as did original nerve biopsy CIDP. Sorry to waffle but none of us r simple r we. U sound as though u have been thru the mill.

How did u cope on inf? Gg in for 3 days and having high dose to start, so worried re side effects as life awful enough on daily basis, but if I can walk properly again I don't care.

Love Amanda xxxxxx

[DaleDiva]

Sorry, what is CIPD?

[Hidden]

It's the chronic form of another auto immune condition, guillain barre, which u may hav heard of. X

[DaleDiva]

Thanks.... yes I have heard of Guillain Barre Syndrome

[tremarel]

Sorry Amanda I mixed up the diseases. you are talking about CIDP, Chronic inflammatory demyelinating polyneuropathy. & I got CVID which is common variable immune defficiency..

They do use immunoglobulin for lots of diseases but I think for your disease they use a masssive amount over a short period probably over a week or two. This is to knock your own immune system on the head. With mine my own immune system doesn't work properly so I am open to all the deadly diseases & infections so I have a smaller amount every week that I do at home. I do appologise for the mix up. I do so hope the immunoglobulin helps. I have never had bad side effects with it. Just sometimes I feel a little tired but then I'm always tired & worn out anyway. They do say you can have flu like symptoms too.

Anyway all the best on your treatment, let me know how you are doing & if it helps.

Hayley x

[Hidden]

Don't worry Hayley, just nice to hear from someone who has had the infusions. Yes I should b in for 3 or 4 days depending on how I tolerate it. They will speed it up or slow it down according to how I am coping. Will let u know how it goes and hopefully b able to tell u it's worked. If it doesn't after several infusions, there will b nothing else they can do for me so fingers crossed. Take care and thanks again xxx

[sraines]

Yes I have had lupus for approx 5 years- probably longer, but that's when I was diagnosed. I had Gulliane Barre last year and now suffer from it's chronic counterpart CIDP. I have IVIG every month.

[Hidden]

Thanks for the info. Hope the infusions are helping. How does the CIDP affect you? I'm stable at the moment on ciclosporin thank goodness as this was the last resort, just hoping it continues like this for some time. Xx

[DRizard]

Time to add my story - Neurologist thinks I have CIDP - but one other tests from Rhemo Doc says I MAY also have LUPUS - but my symptoms match CIDP much more than LUPUS. AND since I am over 65 medicare PART D will not cover IVIG. Also note - just to make it more FUN I got this after Prostate cancer (yes I am a guy) but part of my treatment was female hormones (which gave me HOT flashes) Steroids for short term relief

[Dominobob]

My babyboy was recently hospitalized after months of question on what is going on with him. They finally confirmed after mris and lumbar puncture he has cipd. He did infusions for 5 days and now he will have infusions for minimum of 18 months... 12 months every month then if he’s responding well will be weened off starting like every other month for a while. It’s a lifelong condition and may have to them start monthly infusions again. The neurologists say you may not see any improvements for 3 months or ever actually or you may see improvement immediately... but the treatments make sure no additional damage or depending on person may continue to decline. Hopefully my boy and you respond well to the treatments. He’s 10 years old and handled the infusions like a champ so you should hopefully have no issues. Prayers to you!