View Full Version : gah! pred leg cramps

03-19-2011, 02:31 AM
as some of you know, i'm still not yet diagnosed, but suspected of Wegs. anway, they have me on 3 weeks of pred to see if i get relief.

i'm at 25 mg right now, and feeling good except for horrible leg cramps! and i know that 20-25mg is not a high dose, so i dread having to potentially go high dose with legs that already hurt this bad. i cant sleep!

does the body ever get used to the med and stop the cramps, or is there something i should be doing?

03-19-2011, 03:16 AM
The body doesn't get used to the pred and the cramps can be a big problem even at lower doses. Take magnesium and make sure you're getting a bit of salt in your diet. Not too much salt or you'll get very bloated and gain weight easier on the pred. And too much salt with pred will also increase your sweating.

Just to make sure... Do the cramps go away or are they constant day and night?

03-19-2011, 03:23 AM
they start about 7 hours after taking the pills, and last maybe 6 hours and then subside. which is why i will have to time my dosing so it doesnt hit me at midnight like last time!

03-19-2011, 11:26 AM
I have also been having leg cramps, mine are at night. I have just switched from cell cept to ctx, pred down to 12.5 mg. I have taken mag and potassium without help. New rhum states this can be the WG last night only woke up once, took vicodin at bed time.

03-19-2011, 01:19 PM
I had leg cramps when I had a higher does of Pred, after I got to 15mg they seemed to clear up.

03-19-2011, 02:19 PM
Shari, I've never heard of leg cramps being due to Wegs. Is that from a Wegs specialist? Why would Wegs cause leg cramps?

03-20-2011, 12:03 AM
She is not a specialist in wegas but did train under doctors at uof m that were treating wegs. So far every thing she has said or done seams to be on line with every thing I've read here. I don't just go wirh the flow anymore. She stated thatr it can affect the muscles. I have had potassium, magnisum and b-12 checked all nl. Only thing new iis the cytoxan.

Chris G
03-20-2011, 04:00 AM
Shari - I see docs at U of M. Do you see docs there? If so, which docs, and for how long?

03-20-2011, 10:37 AM
I see dr mohan in lansing now. She interned at the u. Everything so far that she has told me has been confirmed here. She is the first rhumy that has not been shy about taking the bull by trhe horns. Stated if I can't get under 15 mg pred I have nevere been in remission. Diag 1/2007.

03-21-2011, 03:37 AM
I think that is definitely true, Shari. You should at least be able to get to 10mg pred. If not, the Wegs dog is still prowling the neighborhood. :ohmy:

03-22-2011, 01:52 AM
oddly enough my leg cramps subsided after my 3rd day on 20mg. i havnt been hungry either, which is a plus. however, the fullness in my ears has gotten a bit worse again, after 2 days of feeling mostly gone. i'm still on 20mg. i did some digging around and seems that ear nose throat problems can happen in Hashimotos too, which i did test positive for. i hope i find out whats going on soon! i definatly have hashimotos symptoms. i just cant find a lot of reliable info as to weather burning nose/sinuses and ear pain are part of that disease too. i find people talking on hashi message boards who complain about similiar issues, but cant find any real info.

Chris G
03-22-2011, 02:55 AM
Glad to hear your cramps are better! But I was also hoping the pred would be easing your symptoms by now. What's next for you? Do you have an appointment with a specialist?

03-22-2011, 03:04 AM
i have an ENT appointment this week. i felt like the first 2 days, i had lots of relief in the pain, and even a reduction in the ringing, though not total elimination of the pressure. now 3 days later, and i havnt tapered yet, i feel like the pressure has gotten a bit worse again, though not so much the pain. this is all so early, and i'm sure you have to let things "heal" a bit. we'll see what happens. my last doc appointment seemed to think my issue was in the eustacian tubes because my ears looked fine from what he oculd see. i totally believe that. i guess you cant really see the tubes from the outside, so i dont know how they'd check that problem at the doctors. i'm 90% sure it will be another "i dont think its wegeners, but we'll run the test anyway". and since my symptoms are so mild and localized, im not sure i'll EVER have a positive blood test. nothing even looks abnormal enough to biopsy at the moment. i just dont want to go deaf or damage my poor ears in the waiting game.

03-22-2011, 08:38 AM
i had leg cramps for the first few days on 60mg but these did wear off. Today i am tapering down from 7.5 to 5mg and my legs are achy again! Might have something to do with the 5 hour train hourney i've just done....

03-22-2011, 10:02 AM
5 hour train? Where did you go?

03-22-2011, 10:54 AM
To Gt Yarmouth in the UK, but tis 3 hour car journey. Since i had no one to drive me i had to go 5 hours and took 3 different trains, not to mention the 40 min wait between trains. Home sweet Home, lol!

03-22-2011, 11:49 AM
That is a long trip and a long day for sure. I have never been on a train and would love to come to Europe to ride on the best trains in the world some day.

03-22-2011, 12:29 PM
Great news today my lymphcytes are comming down. Cytoxan is doing its work.

03-22-2011, 12:35 PM
My ent checked the eustacian tubes by using a flexable scope through nose. I have had tubes in my bad ear helped with hearing no longer any pain. Good luck.

03-23-2011, 02:35 AM
That is a long trip and a long day for sure. I have never been on a train and would love to come to Europe to ride on the best trains in the world some day.

Well they were hardly the best trains in Europe but had some nice scenery rushing past!

03-23-2011, 04:59 AM
I want to go on one of those fast trains that go like say 250km/hr or more.

03-23-2011, 05:41 AM
oooh which ones are they?
I'm amazed actually i was reading while travelling yesterday, i cant do that on a bus or in a car cos i get travel sick if i dont watch where i am going! hahahaaa!

03-23-2011, 01:25 PM
I think one is called TVR in France and another one called Euro Train, but I am not positive.

03-24-2011, 02:19 AM
Oooh interesting...! I hope you get to go on them one day Phil.

Chris G
03-27-2011, 01:49 AM
How did your dr. appointment go Nicole?

03-30-2011, 02:54 PM
I have been getting leg cramps for the past 3-4 weeks, but I thought it was from the methotrexate which I started 6 weeks ago. I didn't realise it is from the pred - which is only 15mg which I have been on for 4 months. No cramps until very recenlty. Interesting!

03-30-2011, 03:21 PM
Can you describe the cramps?

I get an ache in the calves of my legs. It's an odd feeling like the muscle wants to twitch, but hasn't totally made up it's mind to do it. The pain usually hits in early evening and can last for several hours. I haven't had the pain for maybe 6 months now, but it recently just started again. Prior to that it had been happening for several years. Weird stuff.... I have no idea on what I should blame it on, but given the timing, I'd have to say wegs. I do realize, however, that I can't blame everything on wegs....

03-30-2011, 06:13 PM
Mmmm. Very similar description to yours. As in starting with ache in the calves and then twitching and then starting to cramp. I then have to stretch to get rid of it. However none of the full on cramps in the calves that I would get when I was pregnant with my babies. Then it would come on suddenly and I would have to jump around to get rid of the cramps. I would look very silly according to my hubby - but it did they trick! I would have to say it started 2 weeks after I started on the methotrexate for me.

03-31-2011, 02:00 AM
my doctor appointment went like they always do.
Me: "my nose is killing me!"
Doctor *sticks scope up nose and down the throat* "everything looks healthy"
Me: "my ears hurt"
Doctor *scope to test pressure* your ears look perfect.

i dont mean to be a hypochondirac, but i know when something is not right, and hurts....maybe i dont have wegs, i just dont know. my symptoms seem spot-on but my "membranes" always look healthy. well, mostly. i remember when my nose was bloody and crusted on the inside for months. but not anymore. its hard to believe i'm in this kind of discomfort when things look so good and my blood tests are negative for any kind of inflammation.

03-31-2011, 02:15 AM
NicoleB that must be so frustrating!! :sad:

03-31-2011, 02:22 AM
yeah, he gave me some ointment to help with the "burning" but after using it, i realize the burning feeling is deep in my bones, not just nostril skin (haha, for lack of a better word). its hard because i dont exactly live close to my doctors, and keep having to cut out of work. i had a septoplasty a while ago, and was left with a bump in my nose that is more of a cosmetic nuisance than anything. my ENT said he'd fix that for free, and perhaps while i'm under (which WOULD cost money if i decided to sleep thru it) i could beg him to peek around and grab random biopsies? i dont know. i dont think i'll ever get a positive blood test.

i have shortness of breath too, which after a chest xray came back clear, i was given and asthma inhaler. which actually does help for the most part. so here i am, snorting flonase and steroid inhalers, and at least i'm getting some steroid in me and it helps a tad, but i know its not fixing the underlying autoimmune problem.

04-09-2011, 12:53 PM
NicoleB, hang in there. Sometimes it's finding the right doctor to help you out and get you straighten out.

04-09-2011, 01:55 PM
That would be a chiropractor.