Polymyalgia Rheumatica

Dear Carole

Sorry to read about your horrible experiences with PMR and the steroid medication. I have posted experiences on here in the past and have sounded off about these 'miracle' drugs that yes, do enable us to lead a (more or less) normal life but leave us with a legacy of side-effects. I've had experience of terrible hip pain, but when I raised the steroid dose again it faded away almost completely.

Since joining this website I've made contact with other sufferers and we are working to set up a network of self-help groups. There are groups around, but they are pretty unco-ordinated at the moment. Hopefully, in a few months we'll have a much more established network. We would like to see much more research into the causes and treatment for this life-changing disease.

So far we haven't been able to come up with any convincing evidence for any dietary supplements that might help, but we are ever hopeful! I'm pretty convinced that the more humid the atmosphere, the more achy and immobile I feel. Several of us also have a hunch that there is a connection with the circulation system more generally - not necessarily the heart itself, but we've noticed that several sufferers we are in contact with have raised cholesterol. I must stress that none of us are medics, we just have the knowledge of living with pmr and/or gca.

If you'd like to get in touch, please follow the links to my personal email or send a message to pmrfighters@yahoo.co.uk

Best wishes

Kate

[quote:41f6376aee=\"Carole Ann\"]I was diagnosed with PMR 5 years ago and have been taking predisilone (steroid) since then. I have managed to get down to 8mg per day but have found it almost impossible to reduce the dose further. I have had cataracts in both eyes induced by the steroid intake and recently had a total hip replacement which I'm sure is connected as the onset of hip pain etc was very rapid. I really hate taking the steroids but without them find I cannot even lift my arms. Damp weather is a problem as it high humidity. I have read about Emu Oil and wonder if anyone has tried it? and did it work? I also have a heart condition and have found many people with heart problems also have/or have had PMR - is heart medication the link ?[/quote:41f6376aee]

Hello Carole - I was interested to read the question at the end of your comments \"Is heart medication the link? I have had PMR for 2+ years and at the beginning of last year was changed from a Beta Blocker to an Ace Inhibitor which was considered to be better at controlling blood pressure - the result was that within four weeks I became very ill and 3 weeks later was diagnosed with GCA (Giant Cell Arteritis) which is linked to PMR. Definitely in my case the Ace Inhibitor either caused or brought out a dormant GCA.

[quote:f4063a4274=\"Carole Ann \"]I was diagnosed with PMR 5 years ago and have been taking predisilone (steroid) since then. I have managed to get down to 8mg per day but have found it almost impossible to reduce the dose further. I have had cataracts in both eyes induced by the steroid intake and recently had a total hip replacement which I'm sure is connected as the onset of hip pain etc was very rapid. I really hate taking the steroids but without them find I cannot even lift my arms. Damp weather is a problem as it high humidity. I have read about Emu Oil and wonder if anyone has tried it? and did it work? I also have a heart condition and have found many people with heart problems also have/or have had PMR - is heart medication the link ?[/quote:f4063a4274]

Had to join in this one as although I have high blood pressure now, it is steroid induced. After a lifetime of somewhat minor problems with LOW BP, I was flabbergasted when informed that the situation had reversed. I was actually quiet for a whole five minutes. At the time I blamed Sainsbury's. Being a very reluctant shopper anyway I could feel my blood pressure zipping up every time I set foot in there as they were refurbishing/refitting it and NOTHING was ever in the same place for two minutes together. I also found that nothing was ever in the logical place for it either. I did hope that when they got their act together things would improve, but I still have to go from one end of the shop to the other just to get milk and eggs. It still sends up my BP (shopping, I mean) but was told a few months later that the steroids were responsible. I believe they're also responsible for my white cell count playing silly whatsits on occasion and also that my cholesterol/triglicerides are up this time.

Prednisolone - Your best friend and your worst enemy!

I was diagnosed with PMR in May 2011 after going through 5 months of horrendous tests to reach a diagnosis. I was put on Prednisalone and things went fine until the doctors told me to reduce it. I got down to 3mg per day and started to feel unwell, pains in arms neck and tired a lot. however I persevered and eventually 2 weeks ago I came off them altogether. I am now suffering some of the symptoms of PMR but not all. I think I am anemic as I am tired all the time, I have pains in arms and neck. The doctor is doing a synacthen test next week to see how my adrenal glands are working, he is of the opinion that they are and my symptoms are PMR and that I should go back onto a low dose of steroid, I am in a quandary, does PMR go away by itself eventually or are you stuck with for life.

Hello Wardy

To answer your question, yes it is possible for PMR to go into remission by itself....... eventually. I know of one person who without treatment spent a year in bed, and I spent several months in bed due to undiagnosed and therefore untreated PMR.

BUT, without steroid treatment to control the inflammation, you are at high risk of developing the linked condition GCA (Giant Cell Arteritis) which can lead to loss of eyesight without emergency treatment with very high dose steroids. I speak from experience as without diagnosis and treatment for PMR I went on to develop GCA.

There are also other possible nasty health conditions if inflammation is allowed to course through your body without treatment.

I had a severe flare in symptoms at 5mg and not knowing better at the time continued reducing down to 3mgs when I was on the point of becoming bedbound again. My steroids were increased back up to 10mg and slowly I reduced again but remained at 5mg for many months to ensure that this time the inflammation was kept at bay before continuing reductions and eventually getting off Pred. This took 5 1/2 years.

It seems a shame that when you started to feel unwell again with fatigue and pain in your arms and neck, you then continued to reduce, whereas if you had just increased slightly for a short while you would have stayed on top of the inflammation and eventually gone into remission.

It will be useful to get the results of your adrenal test, but if it was me I would get back on to a medium dose of steroids very quickly as if you leave it much longer the inflammation may gather pace and you will be back to square one.

I do hope this helps and I wish you well. Do come back and let us know how you get on.

Hi Wardy - MrsO has said most of it so I'll not repeat it.

However, maybe there was a misunderstanding about the reduction. The pred hasn't cured the PMR, there is no cure, but it is used to manage the symptoms so you can have a better quality of life. The dose you are started on is one that is enough for the vast majority of patients - and then you should reduce slowly to find the lowest dose that is enough to control your symptoms. And that is YOUR symptoms, not mine, not the neighbours, not the cat's :D Everyone is different and some will manage to get down to 5mg or even less - others don't, I cannot get below 9mg/day without the symptoms returning and that is after 4 years and trying several times.

As soon as you felt the symptoms starting up, the stiffness and so on you should have stopped at that dose or slightly above - that is your lowest effective dose. It is also common for doctors to recommend staying at 5mg for at least 6 months, sometimes more, and that does seem to help people get further down after that stabilisation.

As MrsO says, letting the inflammation that causes the symptoms get out of hand is a risk. I too would ask to go back to at least 5mg for a week or two and see if that works - you may need an even higher dose though and almost certainly will if you leave it much longer.

Eileen

Spot on, Eileen, I think.

I was diagnosed with PMR about a year and a half ago after several months of increasing pain and a load of blood tests. Sure enough, ESR and CRP were higher than normal. I'm Type 1 diabetic, so my rheumatologist started me on a lower dose tham most would go on, at 10 mg/day with breakfast. Prednisolone tends to raise blood glucose levels and everyone thought my insulin doses would have to rise. In fact, the loss of pain meant my system was under less stress and I have had to reduce my insulin doses gradually back to normal for me. At time of diagnosis, my insulin requirement had risen by about 75%. A huge increase and my BG's were still tending to be high. It seems T1 diabetics are more prone to things that appear to have autoimmune-like characteristics.

On start of steroid, it took about 2 days for symptoms to be bearable, followed by steady, slow improvement. I was pain free after about 2 to 3 weeks. After 2 months, I started reducing the steroid dose as discussed with my rheumatologist and GP at the rate of 1 mg down every 2 months. When I reached a dose of 5 mg/day, I reduced the reduction rate to 0.5 mg every 2 months. I'm now down to 2 mg/day and all still OK. Hoping to be steroid free by the e/o 2013. Also, I want to get off the alendronic acid and calcium/D3 that help protect my bones from the calcium depletion caused by the prednisolone. Will be off 3 more pills by the end of this year. Hooray! But at least I have had no serious side effects from the steroid.

Hi Steve - welcome to the discussion (at least I don't remember your name, assuming Steve is male you tend to stand out!)

T1 diabetes is an autoimmune condition anyway - there is a big difference between the causes of T1 and T2. It doesn't matter what autoimmune disorder you develop - you are then at more risk of developing another. Sucks a bit really!

One group in Italy did a study starting their patients at 12.5 mg/day and achieved similar results to what are found with 15 or 20 except it took a bit longer to achieve maximum relief, the dramatic improvement in under 48 hours found with most pure PMR patients (as opposed to the ones who have added extras in the form of other arthritic problems) was still seen. Overall, that will make a massive difference to the total dose of pred which is what they are attempting to achieve.

I've taken daily calcium/D3 religiously since I was put on steroids but only took AA for about a month. I have no objection to it being used if there is evidence of loss of bone density but I do object to the concept of prevention is better than cure which, in fact, is now felt by many experts to be a false one. Over 4 years with at times quite high doses of pred my dexa scan is unchanged. It would have been 4 years of unnecessary AA - and that is approaching the maximum period it should be used without a break. Plus - it occurs to me - had I taken it what would that have done? There is a suggestion that the bone formed can be brittle because it has a different structure and is prone to atypical fractures - is that something that happens in bone that is actually normal but subjected to AA?

As for blood glucose - mine have remained normal the entire time. Cholesterol has gone up and I was persuaded to take a statin last year by the hospital - it was very against my will and I was proven right! Within a couple of weeks I could barely walk 50m and was in so much pain despite high doses of Medrol. I stopped taking it, the cardiologist approved - but it took months for me to recover to the state I'd been pre-statin.

Good luck for the rest of your reduction - do hope you are successfully one of the 25% who can get off pred in 2 years!

Eileen

I was thinking of asking my GP about coming off the alendronate, too, for the very reasons you give, Eileen. And yes, I'm male. Both my GP and rheumatologist wanted to prevent potential loss of bone rather than to reverse osteoporosis, which I don't have. Alendronate, in effect, bonds to calcium semi-irreversibly, thus progressively coating exposed calcium atoms in the bone matrix with an organic chemical (I mean in this context a chemical classed as organic rather than inorganic. I'm a chemist by profession). The interruption of normal bone cycling could lead to, I suggest, a potential for changes in mechanical properties of bone over time. I would not like to suggest demonstrable adverse changes are caused but I want to be cautious for my own health.

I think I'll book a telephone consultation with my GP, shortly. I have no problems with continuing the Ca/D3 tablets.

I'm also taking a statin (simvastatin 20mg) and had no problems with it. When I developed the PMR, before diagnosis I tried stopping the statin as I was aware that some were associated with severe muscle damage in a few people. No effect so I restarted on the simvastatin. Diabetics are very prone to health problems affecting the cardiovascular system, so I have no quibble with taking preventative measures. T1 is tough enough without risking all the complications.

I should mention also that a hint of a cataract was detected on my last diabetes retinal check. Another good reason to end the steroid. I believer there have been some small studies that show that regular doses of ginger may reduce or prevent formation of cataracts. As I love ginger and it's harmless and cheap, A couple of ginger biscuits per day or a stir fry with fresh ginger or ginger and orange marmalade or honey & ginger tea all seem rather acceptable. Even if ginger does not help, I'm not doing any damage.

Hi Steve

I thought it might reassure you to know that I didn't take any AA meds during my 5 1/2 years on Prednisolone, starting dose 40mgs (PMR and GCA). A private DEXA at the outset (NHS refused!) revealed normal bone density. The test was repeated 2 years later (courtesy of NHS this time and this showed a very slight reduction to osteopenia levels. Another 2 years later, and a further scan showed it to be in the same range - quite possibly a normal age-related result rather than due to the steroids, but no treatment needed.

Neither was I ever prescribed Ca/D3 meds - my GP thought my rheumy had prescribed them, and vice versa! A lucky escape maybe as I've since learned that supplementary calcium may have aggravated my sole kidney (CKD3). A recent Vit D blood test, however, revealed a low reading of 36 (in common with many of us in this sun-starved corner of the world, it seems!). I have just completed a 3-month course of Vit D (colecalciferol) and repeated blood test has shown a great improvement to 89, so I'm a very happy bunny!

I wasn't able to tolerate the usual PPIs prescribed alongside the steroids (Lansoprazole, Omeprazole) - horrid bowel problem especially with one, so my tip for tummy protection is a 'live' yoghurt with breakfast each day before taking the steroids. I also drink a glass of warm water with a few squeezes of lemon first thing each morning, and take a teaspoonful of Manuka honey - all good for the digestion.

Like you, I have also developed small cataracts (my ophthalmologist believes this is age-related rather than due to the steroid) and have high eye pressures - although that can be a side effect of the steroids, I think I had the tendency pre-steroids. I was very interested to hear the "ginger" tip re the cataracts - also love ginger, and a good excuse to indulge in a ginger biscuit or two!

It's wonderful to hear how well you are doing with your reductions, Steve, and long may that continue - best of luck.