Is the cure worse than the illness?

Hi Pauline, Dublin

I am sorry to hear you are not at all well with taking the steroids.

I have been on them for two years, going up and down from 20mg now down to 9mg Some days I feel very well others not so good. I have the opposite trouble to you with my weight, going up.

I do hope you get it all sorted out and start feeling a lot better soon

Shall be thinking of you.

Spammy

Hello Pauline

So sorry to hear of your suffering over the last few days - yes the steroids can cause nasty bruising but I haven't heard of bruising under the tongue that you describe. However, as there are over 80 possible side effects of Prednisolone, anything is possible! Over the last few years I have experienced burst blood vessels in the eyes, nosebleeds, blocked sinuses, bruising and thinning of the skin. The important thing is that you have been checked out and given the all clear. I do hope that you are now able to eat normally as I know you already have worries about your weight loss. Although it is not much help at this moment in time, the side effects do reduce along with reductions in the dose. In the meantime, I wonder if perhaps it is possible for your GP to refer you to a dietician/nutritionist for some advice on some sort of supplement to help with your loss of weight?

Very best wishes

MrsO

Hello Pauline

I was really shocked to hear of your terrible side effects you are having from the steroids I personally have never heard of anyone that all this has happened to At least you have had all the tests and they may have to come up with another form of treatment for you

My skin is quite thin and cuts and bruises quite easily but I am now on my second bout of PMR and steroids and have this time been on them for nearly 2 years so I would expect something to build up by now

My sleeping was bad when I was on 20mg and I dont think started to settle down till I was on about 10mg I used to hate waking at about 4 or 5 and feeling very wide awake and knowing that later I would feel very very tired !! Also got mild night sweats at first Never had blood pressure troubles (yet) ! and have gained weight unfoirtunately for me

Everything has been very mild and I am really sorry to hear of your very strong reactions and I hope your Drs will be supportive

Best wishes

Mrs G

PS Have always found it helpful to keep a record of bloods , doesage and how I am feeling

Thanks everyone...my tongue is nearly back to normal now,so at least I can eat properly again :D !! I am lucky that i have a very supportive GP who errs on the side of caution and does not automatically assume that problems are all related to steroid use, and arranges the necessary tests to be on the safe side.Today was a good day, I got to tidy up my garden, which always makes me feel better, and went out for dinner with my family, which i find very important as some days I just don't have the energy to make the effort.I was a nurse before i had to give up work because of osteoporosis in my back, and my doctors all reckon it is pretty typical that those of us who have worked in the medical profession seem to have atypical symptoms and reactions to medication !!! Maybe I just had unrealistic expectations of how this would affect me and tried to do too much too soon...but being a patient rather than the one caring for patients is still something that I have to come to terms with. Hope you are all having a pain free and enjoyable bank holiday week-end. Best wishes, Pauline

Dublin Ireland

I read somewhere (and I wish I could remember where) that sometimes people have an adverse re-action to steroid tablets and may need steroid injections. Sometimes the adverse re-action can be caused by the enteric coating of the tablets.

I know the moon face, night sweats, problems sleeping and also weight gain or loss can and do occur early, but as far as I can recall, you have not been on steroids for more than 6 weeks. Correct me if I am wrong.

I found the easy bruising etc came along about six months later, but it can vary because of your age anyway, as you get older you bruise more easily anyway and some of us have bruised more easily since childhood.

I suggest you have a chat with your GP about this and maybe see what has caused such side effects so quickly.

If I find where I read it or parked it, I will come back, but nothing is lost by chatting to your GP.

Hi Mrs K.

I have been on the steroids for 3 months now, having been diagnosed the last weeek of April. I remember the consultant who looked after me in hospital & referred me to the rheumy telling me that i would be dancing around like a new woman within days :lol: Clearly a man who has NEVER had PMR or been on steroids!! When I first realised that there was no quick fix to this and it would be many months rather than days, I was a bit depressed to say the least...but reading how you all cope and getting useful advice from others who know the reality of managing their illness has been a great help.I don't know why the doctors just can't be more honest...my own GP is, but it seems to be a trait sadly missing in most.Have no pain at all today and only a few small new bruises, so all in all things are not too bad, and as I have a friend just recently diagnosed with ovarian cancer and started on her first round of chemo, there are worse things than PMR to have. Hope you are keeping well. Best wishes, Pauline

Hi Pauline,

I was sorry to read about the problems you were having. I have also been taking steriods after being diagnosed with PMR about 3 months ago. After the first few weeks I to noticed that bruising was very bad. Had a blood test and the bruise continued to grow for about 3 days ending with a 8inch bruise that took about 3 weeks to go. I am also suffering with a very sore mouth and seem to have some swelling under my tounge. My neck sometimes swells and often feels as though I have something tight tied around it.

I have been blaming the calcium suppliments as these things seem worse after taking the calcium. Before having PMR I had alergic reactions to all sorts of things. Lots of my alergies have settled down which I put down to the steriods but I feel my imune system is reacting to something I am taking. I am seeing my Dr in a weeks time and will discuss my reactions with her then. I was pleased to hear you were feeling better. You do seem to have a good GP who takes you seriously. I would be interested to know if you learn any more about why you experienced the bruising under your tounge. I hope things continue to go well for you. This site is great and stops me feeling that I am the only one having problems. You are quite right about being lucky that PMR can be treated and we can go on with day to day life even if some days are more difficult than others. Keep in touch.

Regards

Jan :lol: