GCA, Prednisone and Sweating

Hi I'm afraid I have all the same side effects, the sweating, moon face, sleeping for 3 hrs. And not being able to get back to sleep, it has improved since I have come down from 80mg pred to 20 mg pred, I have to change my clothes like at 4 this morning and haven't been able to get back to sleep,

I was diagnosed with PMR first in January and it was only when i was reducing from 20mg pred down that I got the symptoms of GLA , jaw pain, swollen arteries at both sides of head, severe headache was in hospital had positive biopsy, and was on 60 mg pred but then I had temporary sight loss and they up my dose to 80mg pred,

I know drinking lots of water helps with sweating and I mean nearly drowning yourself in it, I don't know a lot about this disease, or pred still learning but I'm sure someone with a bit of knowledge will be on soon good luck

Follow this link  http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316 it leads you to the pinned section for PMR & GCA. on this thread.

Check to see if there is a Support Group near you as well.

You need to gather as much knowledge as you can on GCA, and you have come to the right place.

There are 82 listed side effects of Pred, but no one gets them all, we do get the common ones which are listed on the paper that comes with the prescription.

The side effects do wear off over time, but it is a long haul.  In the meantime there are loads of tips and tricks to help you.

Always remember that pred is controlling the inflammation that is raging and if not treated would lead to partial or total loss of sight.  That makes what you are currently experiencing bearable.

I can assure they do subside, but as we are all different it takes different lengths of time for each individual.   There is a booklet available called 'Living with PMR & GCA'.

You will get through this journey that no-one ever wanted to undertake. 

Talk to your GP or Pharmacist about the fluid retention.

Extract of Sage can help with the sweating but be careful, never buy over the counter drugs without talking to the Pharmacist and never get a new prescription made up until you have talked once again with a Pharmacist they know more about drugs than anyone else and they will tell you whether the stuff is compatible with what you are currently taking.   Make a new friend.

Keep coming back and ask the questions.

 

LJC60, miserble as it can be, unfortunately the sweating is caused by both the inflammation of GCA and from the steroids themselves, and the latter also very commonly causes both the moonface and the fluid retention.

All these side effects will improve as the steroids get control over the inflammation, and as you reduce down to the lower doses.  

Meanwhile, it can help to reduce the length of each bout of sweating if you wear only cotton clothing - artificial fibres just trap the perspiration on your skin.  I found that my head was one of the worst areas to be affected and I switched to cotton bed linen, putting a thin cotton towel on my pillow at night.  Drinking decaffeinated tea and coffee, (or even avoiding the latter) can help.  Alcohol can also worsen the problem.  As Elizabeth has suggested, plenty of water is important.

The fluid retention can be helped by including plenty of known diuretic-type foods in your diet, such as asparagus, garlic, fennel, and melon.

Hang on to the good news that your blood tests have returned to normal, so at least the steroids are doing their job and working well for you.  Don't try and fight the weakness and fatigue - just give yourself plenty of rest and TLC to help in your recovery.  Better days are around the corner - Lodger and I are proof of that having both experienced GCA and slowly come out the other side.  So stay positive - you will get better.    

Horrible is the right way to describe it!! But it would seem you are doing really well if your blood work is already back to normal so that is a light point to hang on to.

The phrase "grin and bear" it is one I have learnt to keep in mind as there doesn't really seem to be a lot else to be done.

I am still working - sweaty face and all!! - yesterday one of my more direct colleagues and I were talking and she asked "why are you sweating" - a reasonable enough question as we were sitting still in a cool room!!

They have got used to me dripping sweat at the drop of a hat - and I have got to the point where I just accept it.

The fatigue and weakness doesn't happen as often now that my dose is under 10mg - although when it happens I take a nap if possible, or just sit quietly for a while. In the beginning it was much worse and I wasn't (couldn't) working for the first 3 months.

Things will get better for you and I am hopeful that "normal services will resume shortly" for all us pred users.

 

LCJ I really feel for you. I have the sweating, it is probably one of the worse side effects of pred I have had. I have not found any good way of helping it, I have always used cotton sheets anyway, as I even wake up with the sweats. The rheumatologist just shrugged and said it was a side effect.

I have bad fluid retention with very swollen feet and legs, I tried manual lymphatic drainage, I don't know if the person who did it was not much good but it did not really help although others say it has. I do go for leg and foot massage which I really enjoy and gives short term relief.

I also get the extreme fatigue, I just give in to it. People cannot understand I cannot join them for barbecues etc, they say why not have a rest in the afternoon, if only. In fact I counted that I have fourteen side effects, not eighty two!

I have given up gluten and simple carbs with an occassional slip which I was told helped the moon face.

Hi LJC, my timeline matches yours: GCA, diagnosed in early March, started on 60 and now down to 30 mgs. My sweats have just recently improved. I drink water plus unsweetened iced tea with no caffeine but lots of fresh mint brewed into it. To make me feel better, I printed a pred dosage chart off the computer so I can see the tapering long term...like maybe there is light at the end of this " wet" tunnel! Keep a smile going, Ann11195

Oh yes, terrible sweats, day and night, but especially at night. Tonight will be fun, our bedroom is currently 30 degrees with all the windows open.

I'm currently on 22.5mg Pred for GCA and have the horrible moon face and weight gain. I'm trying to eat very sensibly, but I think it's a long haul before I begin to look like me again.

Hi - we sound like GCA "twins". I have everything you describe and it's incredibly debilitating. 

Others have given you very good practical advice to help you feel more comfortable.

Just hold on to the thought that oneday you'll reduce to a level of Pred where these nasty side effects will peter out.

We need the Pred to control the inflammation and, unfortunately, for some people - like you & me, it comes with side effects we could well do without.

Keep in touch with this forum - everyone here is so supportive and understands what each is dealing with.

All the very best to ypu.

Jean

 

I have had jaw pain since Christmas and began taking 60 mg steroids a few weeks ago now tapering off to 30mg. Had biopsy no results yet. I have started to sweat after food and drink is this the drugs or the condition?