No Prednisolone

Hello Green Granny

As if we don't have enough of a dilemma just dealing with PMR and steroids, let alone the added supposedly protective medication.

I remember my bad experience of bowel problems with what were supposed to be two different stomach protection tablets when first prescribed Prednisolone. My rheumatologist told me not to take them, and I said I was worried about having a 'burnt out stomach' from the steroids to which he replied that he'd never seen a case of that yet! Instead I have taken a daily live organic fat-free yoghurt immediately before the steroid dose, plus the added milk on my muesli. [b:5d0587d4cc]Have you tried the yoghurt as I'm sure it would help with the indigestion?[/b:5d0587d4cc]

I was never offered calcium supplements and as I had never had a DEXA scan and being aware of the steroid risk of osteoporisis, I asked for one at the outset of Prednisolone treatment. I was refused by both the rheumatologist and the GP, who said I didn't need one and that in any case there was a 9-month waiting list. The only alternative was for me to pay for the scan. The results were normal. However, two and a half years down the line of steroids, I dared to suggest another scan and this time the rheumatologist happily arranged it! This time the results were normal hips but osteopeania of the spine (the stage before osteoporisis). When I mentioned to the radiologist that I had never been given calcium supplements but that I had only one kidney which was showing up a lower than normal reading, she confirmed what I'd already read that if anyone had any kidney problems they should not be prescribed calcium supplements. So, I just do as much weight-bearing exercise as I can, ie daily walking, Tai Chi and now a new exercise class called \"Extend\", and nurture the hope that I may at some time soon have a future without the steroid risk. What I don't know, and maybe someone out there does, is whether the risk to the bones is negligible when on the very low doses.

Do hope this helps.

MrsO

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Hello again Greens and it was lovely to meet you in London last Thursday - I do hope you had a good, even if very long, journey home.

Just to say that I'm sorry to hear to hear you have developed kidney problems. Although I'm not aware of your particular problem, I just wanted to ensure you were aware of the risks of calcium supplements to anyone with reduced kidney function, as outlined in my reply to Green Granny..

Best wishes and take care.

MrsO

Hi Mrs O,

Yes, had a v good trip back but PMR has been playing up a bit since I got back! It was good to have a chance to meet up in London.Thanks for the comments about Calcichew- I will raise it with the GP when I see him. I think my kidney problems are fairly mild but to be honest I am not sure when it was first diagnosed and whether it ties in with the start of Calcichew.- Greens

Thanks MrsO, it was there at the back of my mind that there was maybe a problem with calcium supplementation and kidneys but I wasn't sure enough to mention it without looking it up first.

In my reading I saw info that the main bone density loss is in the first few months of treatment, slowing later, and that once the dose is down to \"physiological\" levels rather than the \"pharmacological\" doses we start on the bone loss slows to a stop. I'm counting on that as I've stopped the alendronic acid on the dr's recommendation and I really didn't like it at all. Mind you, no doubt, there is a variety of opinions on that like everything else!

I remember you saying about the alleged wait for a dexa scan - I was told it was 3 or 4 months at least in the NE where I was living at the time. Interestingly, I knew better: it was my husband's department that did them and he told me they'd NEVER had that long a wait and would have been in serious trouble if it had been - our sort (prior to steroid treatment) would have been done within a few weeks.

Interestingly, too, despite support from all the departments who needed dexas done, his business plan for its replacement (due to its advanced age) was turned down by the powers that were. At the time the GPs were being told the \"preferred supplier\" of the scans was a company with a certain ex-Health minister featuring amongst its board!!

Eileen

Hello all Yes I am on AA and Calcichew and they dont seem to give me any problems When I had PMR first in 2002 I only had Calcichew and had one Dexa scan in that time and no problem This time my Dr said AA was now being given as prevention rather than cure as well as calcichew but told me to tell her if I had any problems with them as she said some people do get stomach problems with them I take mine first thing one morning and dont have anything to drink for 30mins after as it states I have had another Dexa scan in this bout of PMR and they said there was a slight improvement in my bone density I only waited 3 weeks for mine I seem to take loads of other supplements ( I forget what they are all for ) !! OMega 3 Cod liver oil Glucosomine Turmeric Garlic to name but a few and Actimel I had been taking Calcichew for quite a while before a Pharmacist said they shouldnt be take within 3 hours of my steroids It is very difficult to get to grips with all of it almost a full time job !! Best wishes to all

Eileen - thanks, so you and I can cross our fingers that the low doses we are now on will spare our bones. Something that the radiologist added was that the experienced rheumatologists can see who is and who is not likely to suffer from osteoporosis just by looking at them! Reminds me of the days when the medics asked us to stick out our tongues.....which is probably what your husband felt like doing over the scanner debacle!

MrsO

hi - I stopped my steroids almost 4 weeks ago - like you my joints ache and mobility is poor - I have to take ibuprofen/paracetaol to help.

My biggest problem is that i feel totlally exhausted with no energy - even after having slept for more than 8 hours i awake feeling awful - did you experience this.

lorna

Hi Lorna,

I presume you were diagnosed with PMR but how long had you been on steroids? Without knowing a bit more about your history it's difficult to say much but you sound as if your PMR hasn't yet burnt itself out and is causing your symptoms - the extreme fatigue and non-refreshing sleep is common in many autoimmune diseases and many of us who have contributed to this forum have complained of it. Some people continue to suffer from it at times even during the steroid treatment - we all have bad days when we feel as if its all come back, usually from overdoing it because we felt so well! It's also a marker in other disorders such as chronic fatigue syndrome and fibromyalgia so the other question has to be whether it was PMR in the first place.

I think it's fair to say that as long as I don't have any pain or night sweats I can sleep for Britain - my husband certainly agrees! And I am one of the people who is really quite well whilst on steroids - I ski 2 or 3 times a week and and travel a lot, don't go a bundle on walking too far but I never did!

Eileen

Hi,

I have now been off the steroids for 6 weeks.I have got some joint pains that are bearable without any medication .Although I am not taking the steroids I still am having some of the side effects of steroid medication namely my hair is continuing to fall out and is completely lifeless and I am also having some problems with sleep.My GP said that it is due to steroids remaining in your body for some time after you have finished taking them and he did not know if the problems would eventually go.He said that I would be wasting my money if I consulted a trichologist about my hair.I am sorry to moan about such minor issues but I wondered if anyone who has had PMR previosly still had side effects after they came off the steroids.

Hi chammer!

Sorry to hear you still have some joint pain after coming off the steroids - although that could be from stopping the steroids!

I was lucky and the steroids haven't affected my hair at all and in fact my nails are much better since I started steroids - during the PMR they were soft and split in layers, it was impossible to stop them catching on things. Hair growth is a quite longterm thing and unfortunately you probably won't see much improvement for a few months. I don't know what you have done so far but a shorter cut often helps - there is less weight so it doesn't fall out because of the weight of the hair and dragging a brush through it. Give it a bit longer before worrying too much about it. But my daughter's mother-in-law has an ongoing very little hair problem (over years) and last year went to a lab that does hair transplants using your own hair. It's a bit complex to explain here - but the result has to be seen to be believed! She says it's the best thing she's ever had done and is planning another session. It is expensive and depends on you having some good hair growth so is not suitable for all types of hair loss. Nevertheless, it might be worth investigating.

The sleep problems may be not so much due to the steroids now as the pain you are still having plus the habit you have got into as a result of a long period of poor sleeping. If you google insomnia you'll find lots of suggestions to try and improve your sleeping pattern to try for a start together with lots of info. Sleeping pills are really not an answer though except for the very shortterm in certain circumstances.

However, I am confused by your doctor's statement. I am not medically qualified (just have a medical science background) but prednisolone is a medium acting corticosteroid and is metabolised in the liver and cleared from the blood within a few hours. The anti-inflammatory action persists for much longer - more like 24-36 hours - which is why it is sometimes possible to take the steroids on every second day and still get the effect. So I don't see how you can say the steroids are still \"in your body\". Some other steroids do have a much longer halflife but are not usually used for PMR.

And to go back to your hair problem - lot of GPs seem to think anyone who doesn't offer a traditional \"orthodox medicine\" answer to a problem is a quack. They seem to forget that if something has made a problem less of a problem and improved quality of life, then it has been a benefit. Even orthodox medicine can't cure everything - and PMR is a case in point. There is no 100% certain answer to what causes it and the corticosteroids only control the symptoms to (hopefully) allow a reasonable quality of life, they do not cure it. It's not a minor issue to you - so it matters. And if anyone doesn't agree - they don't have to read your post, or answer it. This forum is a brill place to have a moan - someone will nearly always have something to offer you,

best of luck,

Eileen

Hello Chammer

I'm sorry I can't remember how long you have been on steroids for and on what dose. When I was on the higher doses, I had considerable hair loss especially during shampooing. I stuck to organic shampoo and conditioner and eventually when reaching the lower doses I found that the hair loss lessened. However, it remains very fine (although always has been) and can break easily. I feel sure that although you are now off steroids, the body will take longer to get rid of the side effects. My friend lost all her hair due to treatment for breast cancer and, in the last almost 2 years, it has grown back. However, her hairdresser has just told her that she should have it cut in a very short, layered style as there is still growth taking place underneath and that this would then really strengthen it.

Diet is obviously very important - my friend said her husband's hair started thickening when he started having a daily yoghurt. Worth a try perhaps....and cheaper than the trichologist!

Do hope this helps and that the rest of your joint pains disappear soon.

MrsO

Hi Eileen and Mrs O,

Thank you both for your replies.I may possibly have misinterpretated what my GP was trying to say.He may have meant that your body is still recovering from the effects of steroids.I was lucky in that PMR for me was no way near has bad as it is for some people.I was only on steroids for 12 months because I had a Dexa Scan after 6 months and has the osteoporosis in my spine had got worse the consultant (general medical) decided to take me off the steroids over the period of the next 6 months.

I have several other medical conditions so I think you are never sure what medication is causing the side effects that you are experiencing.I think I was too optimistic and thought the steroids were responsible for everything.I thought once I came off them everything would be Ok.Thank you both for your advice I will certainly try the things you have suggested.

Is there any way I can highlight and save all the bits from all over that I want to reply to. I have read so much that is useful and/or interesting and would like to be sure I have acknowledged all your helpful comments, tips, recommendations but they appear under so many different headings I'm sure I am losing track. If the only answer is pencil and pad that's what I'll have to do but perhaps someone knows a better way.

BettyE

There is - but it would take too long to tell you how.

Pop down to your local library, explain the the computer person there and they will show you how. They can also tell you when the free classes start and they are fun.

Alternatively, there is a book called 'Windows for Idiots'. I loved it.

Hello Betty, Somebody a while back (Mrs G?) was going to print off pages which were really useful, so I've done that. I've now a folder, real not a computer one, with a large label saying PMR on it!

But don't worry too much, you may notice that we all address the wrong person from time to time and don't know whether to put it down to old age or PMR!!!!!! :lol: Green granny