Newbie

[bettykw10]

Hello I am new to this site, diagnosed with GCA 2months ago started on 60mg of Pred for 3days now done to 25mg.Having some bad reactions to the medication could any one tell me if they are suffering similar, breathlessness ,cramp in hands and feet also shaking.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

That's a quick reduction! Many people do suffer the symptoms you describe, sure those who have/are going through them will respond with advise.

However, personally I would be concerned about your drop from 60mg to 25mg, maybe some symptoms are due to not enough Pred i.e. withdrawal symptoms or a flare rather than the Pred per se.

Think you need to speak to your doctor.

[bettykw10 in reply to DorsetLady]

hi thanks for your reply ,attended the hospital for an appointment, because my breathing was so bad had a ECG, chest x ray , then saw a doctor. the conclusion was I am having a bad reaction to the meds. The doctor informed me that is was better to put up the reaction than the consequences of what GCA could do, I suppose he is right but finding it a bit difficult to cope with.

[DorsetLady PMRGCAuk volunteer in reply to bettykw10]

Thanks for replying, sorry to hear you seem to be one of the unlucky people that has a really bad reaction to Pred. As doctor said, and I can vouch, not taking Pred has more serious implications, so as difficult as it is I'm afraid you'll have to cope as best you can. At least you have been checked over, and now everyone should be aware of your reactions to the medication. Plus, as you reduce, so will the side effects, but please don't try to reduce too quickly and put yourself in danger of a flare. You are in a bit of a Catch22 situation unfortunately, but you must keep the GCA under control.

Good luck.

[Gonfreecs]

Hello. the cramp in hands could be due to calcium/magnesium deficiency. be sure to take calcium+Magnesium+Vitamin D supplements when you are on prednisone. the breathlessness could be a number of things. are you taking any adjunctive medications like methotrexate? if yes it can affect your lungs. if no you should have a lung and cardio evaluation...

Best Wishes.

[bettykw10 in reply to Gonfreecs]

Hi I take vitamin D chewable tablets twice a day prescribed by the GP also a bone protector once a week , I don't take adjunctive medications and had a cardio evaluation all seems to be ok,. the doctor has put my symptoms down to a bad reaction to the prednisone which hopefully will reduce as they do.

[Gonfreecs in reply to bettykw10]

Hi, well I am happy for the up side that there was nothing serious to be found with your lungs and heart; but sorry for your ordeal.

Just for the sake of completion, in the risk of repeating myself, in addition to vitamin D, you might want to take calcium and magnesium supplements too. the problems with your cramping hands could sure be due to calcium/magnesium deficiency. vitamin D helps you absorb more of them, but it doesn't do much if you don't take them. many Vitamin D tablets have got calcium in them, but be sure to take adequate magnesium too.

Best Wishes,

[HeronNS in reply to bettykw10]

I wasn't aware until seeing PMRpro's post that pred itself can cause body to lose magnesium faster than normal. But there's another issue: if we take calcium supplements without also making sure we get more magnesium, through diet or supplements, we risk upsetting the balance between these elements. Magnesium deficiency does cause muscle cramps. Even having in a bath with Epsom salts can help if you are reluctant to add more pills to your regimen. Magnesium is also found in quite a lot of foods, quoting dr google: "High magnesium foods include dark leafy greens, nuts, seeds, fish, beans, whole grains, avocados, yogurt, bananas, dried fruit, dark chocolate, and more".

[Maxine59]

Hello There

I was diagnosed with GCA a year ago - do you know which blood vessels are affected?

I had cramp symptoms in my hands and feet too, and ended up with a diagnosis of large vessel vasculitis. This doesn't mean you are the same so please don't worry. Do you see your GP or Rheumatologist regularly? You may need to talk to them and tell them about the cramp.

Best wishes Maxine

[EdithWales]

Hi and welcome

I agree with Dorset Lady, it does seem a big drop

I have hand and feet cramps that come and go. As does the feeling shaky.I take the calcium supplements and have been on steroid for 2 and a half years and put it down to the side effects.

Good luck, we are all here for you

[bettykw10 in reply to EdithWales]

Thank you it is nice to know that I am not alone , although I have family it is difficult for them to understand how I am feeling .

[DevonMichael]

Wow that seems a steep drop! I have GCA and was started on 40mg in June and have gone down in steps each month now on 17.5mg. There are a whole range of side effects from the steroids (reading the instruction leaflet is frightening!) I had numbness in my left hand a few times but that was before taking the treatment and was one of the symptoms I thought of GCA. Good luck with your recovery!

[PMRpro Ambassador]

I'll join in - that is a very fast drop for a patient with GCA.

Lots of people would tell you they have had similar experiences with pred side effects - they will improve as the dose reduces. But there isn't a pred side effect that is as bad as the potential side effect of GCA - loss of vision.

The cramps may be helped by getting yourself some magnesium supplements. Pred makes you lose more magnesium through the kidneys than you usually do. Just take the RDA, too much may give you the runs (think Epsom salts). Some people swear by Epsom salts baths and you can get magnesium spray as well.

[bettykw10 in reply to PMRpro]

Hi my drop in pred medication is being controlled by the specialist at the hospital so hopefully they have got it right.

[DorsetLady PMRGCAuk volunteer in reply to bettykw10]

So are a lot of people, but unfortunately the specialists don't always get it right! What may be eminently sensible on paper doesn't always work out in practice.

Not dissing the doctor, but as we know everybody is different, and one size doesn't necessarily fit all. Just saying!

[PMRpro Ambassador in reply to bettykw10]

In our experience a lot of doctors don't get it right with reductions. Our comments are based on recommendations by top doctors and long years of experience with a lot of patients - if it works that is fantastic. But do be aware of the possibility of a flare when you reduce that fast.