advice welcomed

[Wolflady61]

I was diagnosed with PMR & GCA 6 months ago, started on 20mg preds, now down to 5mg, pain is acceptable, but i find i seem to suffer with a lot of leg cramps, especially at night.. Also now finding i am very fatigued in the day, but am still managing to work, but need a nap when i get home..then cant get to sleep at night...

Am now also on the omaparazole and calcium tablets to stop effects of preds, also i am piling on the weight, and its not thru what I eat......

I would welcome any advice any one can give me, ie ive seen somewhere that taking the calcium pills at night helps you sleep better, is this true?? I take all my tablets together at breakfast ?

Thanks

[SheffieldJane]

A Magnesium supplement is said to be helpful for cramp. I think Magnesium gets depleted with the use of steroids. I was prescribed 10 mgs of Amitriptylin to take one hour before bedtime and it works in spite of a daytime nap which we need. Calcium is said to ease restful sleep.

I doubt that you need Omeprazole anymore, just line your stomach with yoghurt or something similar. Omeprazole is not advisable long term, you may have to wean off it ( like every other day) because you can get a backlash of Acid. I didn't but I only took it half heartedly.

Well done for hanging on to your job and reducing to 5 mgs. Watch those pains in case they herald a flare. No virtue in putting up with pain, you might end up back at the beginning.

Best wishes Jane

[Wolflady61 in reply to SheffieldJane]

thank you Jane, I am going to ask m y doctor at my next review if i can reduce these.

[1Purplecrow]

Hello wolflady, please try to drink more water to help with leg cramps.

I have struggled for years, deviled with leg cramps and restless legs in the deep of my sleep. Most recently, I was informed I am dehydrated, and I began a focused effort to drink more liquid.

I have used sports drinks, kombucha and WATER!! Interestingly enough, the more I drink of the hydrating beverages, the fewer leg cramps and restless leg episodes I experience.

So, there you have it...my experience... might help you..let us know.

Kind regards, Jerri

[Wolflady61 in reply to 1Purplecrow]

Thank you Jerri, very useful advice

[Nanalinboy]

Hi wolf lady, I'm at exactly the same stage as you, and although I can't offer any advice, I will follow this bread with interest because I'm suffering the same symptoms, I'm now at 7.5 steroids and the pain is as you say acceptable, but oh how I long for those carefree days when I could just get up and go without all the rigmarole and planning . 💞

[Wolflady61 in reply to Nanalinboy]

Yes, so do I , thank fully i can still lead a fairly normal life, just learning to cope with the different issues to start with is a slog..

[PMRpro Ambassador]

You shouldn't take your calcium and pred together - pred for breakfast, calcium for lunch and tea/dinner. Pred and calcium interfere with each other so should be taken a couple of hours apart. Your body doesn't absorb more than about 600mg calcium at one time - so split the dose to improve the amount you get.

"Pain is acceptable" - is it the same level of pain you had at 20mg? If not, what was the last dose that gave you that? That is where you should be really.

The fatigue is probably due to your adrenal glands not being quite up to scratch yet - they went into hibernation until you got down to about 8mg and now have to stage a graduated return to work to top up the low dose of pred to the amount of corticosteroid your body normally makes naturally.

The cramps may be due to low magnesium levels in the muscles. Having a blood test won't necessarily show it unless it is desperately low (it is taken out of the muscles to keep the blood level right), So try some magnesium supplements. Epsom salt baths also work for some people.

Pred associated weight gain can be helped a lot by cutting carbs drastically - I lost 35lbs while still on between 10 and 15mg. It is only hard for the first couple of weeks - and it is easy to fit into family cooking and eating out.

[Wolflady61 in reply to PMRpro]

Thank you for your useful reply. Pain is not as bad as it was 6 months ago, I also had very severe coccyx pain for a few months before diagnosis and that is now a lot better. I think it was really the onset of the chronic fatigue that got me the diagnosis, before that i was just being given anti inflammatorys.

I am going to try increasing my water intake to help the cramps, and hope i can reduce carbs and increase exercise to get the weight off, I have put on 2 stone in 6 months on preds.

Did you reduce carbs by cutting out bread, rice, pasta etc?? I have been following a slimming world plan but cant maintain anything?

[PMRpro Ambassador in reply to Wolflady61]

Yes - if it comes in a package basically I don't eat it! And I don't bake. I have a wheat allergy anyway (not gluten, something in the structure of the starch) so try to avoid wheat or I itch. Didn't stop me eating the Maltese bread last night though!!!! I do eat carbs very occasionally but it is a treat, not a regular thing.

I have meat/fish/eggs/cheese and above-ground veggies or salad for my main meal and a big bowl of salad for the other. I eat no breakfast - but that is me.

My daughter has done well with SW but it seems terribly complicated! I find no carbs easy - eating out I just ask for more veg or salad instead of potatoes/rice whereas she spends ages trying to identify what she can have without synning.

[piglette]

Hi Wolflady, you have done very well in reducing. I get cramp too from the steroids, the doctor has prescribed quinine sulphate tablets which I think are marvellous. I know a lot of people do not like taking them.

Unfortunately with steroids, eating the same as before tends to make you put on weight which is really unfair. You do have to cut back to actually maintain your current weight sadly.

[DorsetLady PMRGCAuk volunteer]

Just on a slightly different tack - if you have GCA as well as PMR then 20mg is a very low starting dose. Are you sure you have GCA?

[Wolflady61 in reply to DorsetLady]

At first i suffered very bad headaches, and dizzy spells, but the doctor never mentioned GCA, but i finally got to see a neuro in September, and he said the headaches was due to GCA, but the preds would help that. I was on 20mg for 2 months , then 15 , then 10, and now down to 7.5.. I did drop to 5mg, but pain levels escalated so back up to 7.5 now,

[DorsetLady PMRGCAuk volunteer in reply to Wolflady61]

Hi again,

Ok, guess you have a slightly more benign version of GCA thankfully, but please do be aware of any visual disturbances or head pains.

When you are sure that 7.5mg is enough to control all symptoms then maybe you should try a smaller taper, most plans suggest only 1mg once you get below 10mg, but some people find that 0.5mg is better.

You are also at the level that your adrenal glands need to kick back in - so that adds to the fatigue. Now really on both counts, slower is better especially as you are still working.

Good luck.

[FreogoTonyo]

TRy taking magnesium chelate 200 mg with your prednisolone,helps stop c ramps at night.I take my five mg pred.with evening meal,seems to work best with less night pain after ten months