Trying to avoid steroids

[redavenger]

Hello, I'm new to the forum. I haven't had a diagnosis from a doctor but my acupuncturist and chiropractor both think I have PMR. I had blood tests done and was told "everything's fine"; I do not want to argue with the doctor as I think if the only treatment is steroids which does not appear to be a cure, I prefer to ride the storm in the hope it will go away soon! I was a keen walker, backpacker and camper, gardener, worked on my classic cars, etc. and I would like my life back! Most posts I read seem to concern prednisol, has anyone else tried alternative medicine?

[Celtic PMRGCAuk volunteer]

"Argue with the doctor", you must! Or consult a different GP in the practice. Many people with PMR have normal blood test results. A short trial course of steroids should provide the answer. None of us likes taking steroids but they can be lifesavers, and for those of us who have suffered severe symptoms they have given us back some quality of life.

As for your choice to "prefer to ride the storm in the hope it will go away soon", if it is PMR, that is most unlikely and in fact if the inflammation is left coursing through your body you are leaving yourself at risk of far worse than PMR. I do wish you well.

[polkadotcom]

Not really, mainly because there isn't one which will treat the inflammation PMR causes. Steroids dampen down the inflammation causing the pain which in many cases has proved to be impossible to live with. I took steroids because the alternative was being bedbound with pain so severe that even small movements made me cry out.

There is also the damage done to the muscles and joints by the inflammation to be considered, too. Unchecked inflammation of that level could and has damaged muscles and soft tissues beyond repair. If you have uncontrolled PMR the risk of contracting GCA is much higher and that can lead to blindness if not caught in time.

In many cases alternative therapies such as acupuncture, gentle massage and acupressure often work well for further relief along with steroids. I have recently tried Bowen therapy which worked well for me.

If your doctor believes that you should have raised inflammation markers then he is wrong. I and several others who use this forum have never ever had raised markers. Mine remained stubbornly at normal even when I was severely ill, but in every other way I had the classic signs of PMR.

Thanks to steroids I got my life back. Not quite the same but close and I do not think that would have happened had I remained untreated.

[DorsetLady PMRGCAuk volunteer]

redavenger,

If it is PMR , then riding the storm could lead to much more. I was undiagnosed with PMR then GCA for 18 months, and only got a definite diagnosis when I presented myself to local A&E dept having lost the sight in one eye. I was told that if I didn't take Prednisolone ASAP (within the hour) then there was a very great risk I could lose the sight in the other eye. I did as I was told PDQ!

As Celtic says a very short course of Pred will confirm whether the symptoms are PMR. If not, then you won't have taken enough to cause any side effects, if it is PMR then you don't really have any long term options. Sorry to be so blunt, but that's as it is.

Good luck, DorsetLady

[PMRpro Ambassador]

It really depends on how bad your PMR is and how much of your life you want to put on hold. I had mild PMR undiagnosed for 5 years so no treatment - I managed with aqua aerobics every morning, Bowen therapy and an osteopath but I never had a day without pain, couldn't walk far and had to give up a lot. Then it hit like a 10 ton truck - and I couldn't get out of bed or raise my arms above elbow height. I had 6 months of being able to do almost nothing and with severe pain. Then I was given pred, 6 hours after taking 15mg I was back to normal near enough.

Untreated PMR puts you at an even higher risk of developing GCA - if you do then the choice is stark: pred or risk going blind. Whilst many doctors will tell you it lasts a couple of years I am not alone in having had it for 10 years - I think though the end of the tunnel may be round the corner!

[soojay]

Was at Scotland PMR AGM recently,and specialist Dr.from Glasgow said that Prednisolone was "gold standard" treatment for PMR.Good luck.Take it easy.Soo.

[Eddyfly]

Hello Last October I went to my doc with very bad pains in both my thighs all the way down from the buttocks to back of the knees . Doc diagnosed pmr after a few blood tests and prescribed steroids 6/5mg per day for a week well after the first days dose the following morning it was 95percent better after a week it was virtually gone so I put my trust in the prednisone it worked for me doc reduced the medication gradually over two weeks or so and now I'm dealing with other health problems I.e vascular problems in my legs I've had a total of nine angioplasties since may 2006 and have pains on the soles of my feet which my doc and a very interested physiotherapist are trying to get to the bottom of.

All the best and good luck

Eddie

[1Purplecrow]

Hello, i sympathise with your feelings regarding prednisone.

Last summer, a brief, acute episode of asthma (my first), triggered a crushing pain syndrome which i eventually discovered to be PMR.

This auto-immune disorder left me unable to turn over in bed. I could not dress myself, and could scarcely function day to day.

By the time i got through the medical diagnosis process (no elevated blood markers, either)

i was wildly relieved to hear that my condition had a name,PMR.

I must say, hated and dreaded and feared were my first responses to the suggestion that prednisone might be the treatment I needed. However, within 12 hours of my first dose of 20 mg prednisone, i was essentially pain free. In the first week or so, being a skeptic, i "poked the bear" a few times by skipping my dose. I discovered that PMR and prednisone are truly lock and key, and that if i want a life without being wheelchair bound, I WILL take prednisone.

After 8 months of pred, I am down to 7 mg, and feeling optimistic in my experience of "dancing with the Bear".

Perhaps your experience will be different from mine, but please be assured that you have found your way to a forum of advisors and teachers who understand PMR.

They can help you understand and work your way through the experience of taking the dreaded prednisone, and eventually coming out the other side. By the way, i use chiripractic also, and my Chiro immediately identified prednisone as the tx of choice for the disorder. Chiro and acupuncture are highly compatible adjunct therapies to optimize your quality of life with PMR. Good luck on your journey.

[piglette]

I was told by the GP that I had a virus and it would go away. It didn't and without steroids I would be in a care home by now, as the pain stopped me getting dressed even. PMR is diagnosed by discounting all the other things it could be, steroids just relieve the pain they do not cure the disease, although it can go into remission after a period of time, this is usually longer than months. Some people stay on a low amount of steroids for life. I am told 10%, although I am not sure if that is correct or not. Sadly PMR can be life changing but at least now with the steroids I can go swimming again, garden and even carry on with my job. I cannot lead the mad carefree life I had before PMR though.

[1Purplecrow]

Hi redavenger, I attempted a prior post, which appears to have sailed into the black hole, and apologize for double posting, should it appear.

Anyway, I too, preferred alternative treatments to prednisone. After some trial and error, i was so devastated by my inability to walk across the street, that i succumbed to the offer of prednisone. Within hours of my first dose, i was pain free. Being the skeptic, i "poked the bear" a few times by meddling with my dose. The consequences were rapid and crushing return of pain, and ultimately higher dose of prednisone to get the "beast back in its cage". I discovered this forum, and have used the advisors herein to help me find my way through this confusing experience. I am now very precise and consistent with my treatment.

Currently, i have been able to resume life, as i choose to live it. Yesterday included a hike along the cliffs overlooking the ocean, and today was spent gardening.

I have tapered my prednisone down to 7 mg, and am successfully "dancing with my bear".

Best wishes on your journey. J

[soojay]

I suspect that 7mg.is a magic number.Cons.Dr.at local Uni.Hospital said to stay at 7"below not effective,does not do anything".Depending on personal conditions,I suppose and age.Maintenance dose is 5 to 20mgs.Depends what one can stand.Have PMR and Crohns,...struggle,but want to stick at 7.Still get flares but cope and keep drinking WATER ,RESTING,EATING sensibly....torture,but heh,keep on keeping on.!Hugs,Soo.

[duchessrenee]

Hello,

I too have always had normal bloodwork and different specialists arguing I don't have PMR. Fortunately the doctors that count do agree. I was also really physical and participated in all kinds of sports, gardening etc. I know it's hard to face having to be on Prednisone, probably for the rest of my life (I am 54), but the alternative was to live with a severe disability (I couldn't even walk unaided). Now I am almost 95% back doing the things I love, though it was a slow climb to the top of the mountain. I do have a chiropractor and massage therapist which both work miracles (my chiro's son has a form of jeuvenile PMR, so she is totally understanding) and I do yoga etc. which all help. But it is the Prednisone which is the miracle. Once in a while I do get a bit upset about being on steroids, as in my 'previous life' I was very anti-drugs, but then I think about the alternatives, or what if I needed Dialysis every day, or had Cancer and had to do chemo, and thank God that just 5 mg of Prednisone a day has given me my life back. As the other posters have advised, just try it. Eat healthy (I am also on an anti-inflammatory diet, and I swear it helps) take care of yourself - but give Prednisone a chance.

[zorroaster]

Hi my osteopath suggested PMR and my husband who is an acupuncturist agreed! 6 hours of prednisolone and I went from being a 90 year old tottering about and sobbing occasionally to being normal if a bit tired. Now I combine prednisolone with acupuncture and Chinese herbs. I can live a relatively normal life, still working at 64 and doing a bit less but still quite a lot outside work too. My Chinese doctor says that pred is a very strong medicine which does things that she cant do but it doesn't cure the PMR, however combining the 2 means that I am gently treating the underlying causes plus I will be in better health when the PMR recedes. When I saw the rheumatologist last week he was really pleased at how I was doing reducing the steroids so I said it was probably thanks to the Chinese herbs and he smiled!

[mk14]

I too resisted Pred when first diagnosed 7 years ago because of a fear of side effects and just generally 'I want to be able to do this myself'. Luckily for me there had been no problem getting the diagnosis and it was the docs who were sceptical about my holding off the treatment. I didn't get as bad symptoms as some who have posted here, in that I could still dress myself, though found it hard to brush my hair and was virtually chair bound. After a few months of getting and feeling worse and worse, I accepted that I couldn't do it alone, so started Pred and it did indeed make a huge difference. I have had problems with reductions, but that's another story. What I also wanted to say was that I consulted a homeopath when first ill and had homeopathic remedies for a couple of years alongside the pred. I can't honestly say that they made a difference to the physical symptoms, but the experience of seeing someone for an hour's consultation at a time (instead of 10 mins if lucky) and being treated as a whole person really helped me to come to terms with and adapt to my changed situation, as well as understanding and working through the emotional trigger that I am convinced started it all off. So I would say the homeopathy was definitely complementary rather than alternative and useful as part of the healing process. I do have a word of caution though: I am aware that there are homeopaths out there who are very against conventional medicine and would be very happy to put people off taking pred. I now feel the same as other posters on this site, that pred is both life-enhancing in giving you back a degree of the life you had before , and also can be sight-saving in preventing and treating GCA. So I'd ask any complementary therapist what their view of pred is and be wary if they don't seem open-minded about it. It's a difficult journey to suddenly find yourself upon especially if you've been used enjoying your body and being in control of what it can do. Sharing experiences definitely helps, and though I would have hit anyone who told me at the beginning that 'there may be hidden benefits', opportunities have certainly opened up for me as a result of 'grinding to a halt'. Good luck.

[redavenger]

Thank you all for the good advice and encouragement. I have had the symptoms since July 2013 now, and towards the end of last year I was as some people describe, unable to turn over in bed, trouble dressing etc, only slept about 15 minutes of each hour, even swallowing would wake me up. I am now getting about 4 hours sleep a night which is a huge improvement. My arms are pretty useless and I can't raise the right arm above waist height, I have changed my classic car for one with power steering and can drive comfortably now after being unable for 3 or 4 months, cramp permitting! I looked online for alternative treatments and have been taking vitamin b5 and b6, msm, omega 3 oil, evening primrose oil and glucosamine. As well as the acupuncture, which sometimes makes me feel better. I also go to the chiropractor every few months as I have a twisted spine and hips and arthritis in the neck, which has always been manageable with lots of walking and exercise. So you can understand my quandary, am I going to get better without the steroids, however the risk of blindness from GCA is frightening so I still have some thinking to do!

[MJJ7960]

Redavenger, there is a word I like to use when I have a complex decision to make: "discernment." Only you can discern the best path along this journey. I feel the need to weigh in with my own experience, as it seems each of us has a different story to tell and, while there are many points of commonality, no two of us seems to have had the same experience. I had about 2-3 months of extreme pain prior to ruling everything else out, leaving a diagnosis of PMR mid-October last year. I had been very active prior to that time. I am 67 and still work full-time for a non-profit foundation and am a musician. PMR frankly kicked my butt! I took a month off music, thinking that maybe rest would help. It didn't. I started with 20 mg of Prednisolone and responded within 4 hours. It felt as if I had my life back! I am slowly reducing, currently at 10 mg and when I get past a couple of challenging weeks with an office move and a grant due, I will begin the next slow reduction to 9. Yes, I do have some side effects from the pred.: restless sleep, weight gain, edema, some odd skin reactions, occasional fatigue. But I have learned to accommodate to a slower pace and take time to rest when I need. Without the drug, I am not sure I would even be able to dress myself -- my condition last summer when front button shirts was just about all I could manage. I do alternatives as well: massage, acupuncture, anti-inflammatory diet, meditation. I actually try to visualize pred. as my buddy and companion in this journey. I'm hoping I will eventually be able to say goodbye to her but in the meantime we are uneasy partners.

[MoiraCT]

I was diagnosed with PMR after 3 months off work with disabling pain and fatigue. My GP gave me pred, saying PMR was a diagnosis of exclusion, and if pred relieved the symptoms and lowered the inflammation markers, then PMR it was. He phoned me after 2 days to ask how things were. The pain had significantly diminished within hours of the first dose, and I could walk again. But, I had read about the long term side effects and was unhappy about taking steroids. With the GP’s agreement (although I think he was just humouring me) I went down the alternate route. A very strict anti-inflammatory diet, and initially liquid Omega 3. A month later I saw a herbalist who made up a mixture of anti-inflammatory herbs which I took along with the Omega 3. I saw her every month, and she adjusted the mixture each time based on how I was feeling. I think it also helped just to talk things through at length. My GP warned of the increased risk of GCA due to not taking steroids, and told me what to look out for. I could, and did, phone him at any time if I was worried about anything. I was off work for 6 months and phased back into full time work over another 6 months. During all this I had monthly blood tests to check ESR and CRP levels. Everything gradually improved and the whole thing was over in 20 months.

I was lucky in that I had no other health issues, and had been previously fit and well. Also a very understanding GP and employer. I hope everything works out for you, whatever route you decide to take.

Best wishes, Moira

[redavenger in reply to MoiraCT]

Thanks Moira, you have confirmed what I suspected, steroids seem to have the effect of acting as a painkiller but prolonging the recovery time indefinitely. I have decided to carry on without the steroids unless i get severe head pain, at present its 2 steps forward and 1 back for me. Good luck to you, its nice to be in contact!

cherry

[rongreen]

Hi Moira. May I enquire, which brand of Liquid Omega 3 did you use?

[MoiraCT in reply to rongreen]

Sorry, I don't remember, it was a couple of years ago. I did move to tablets - the oily texture of the liquid was disgusting - and recall checking to buy the ones with the highest concentration of active ingredients, EPA and DHA. I got them online from Minami Nutrition.

[rongreen in reply to MoiraCT]

Thank you Moira, I have purchased MInami Products before.

[5lupins]

Hi. I have just sat reading everyone's comments on different alternative treatments . After 9months on twenty and ten preds when they said I had vasculitis (?takayasu arteritis ) ,after a pet scan, I was so relieved that when I was put on 60mg of preds and mycophenolate I just said ok and so began 5 year journey. I have not tried any diet but eat healthily and keep my weight down. At some point I was told it was GCA and I was pleased. Maybe with all your info I will have to try something extra to try and get better and offthe methotrexate and preds. I just feel so heady and exhausted all the time ,but still lucky as the alternatives they were looking for were scary . Bye.

[redavenger in reply to 5lupins]

Good luck with this, I am so relieved that the doctors did not recognise my problem and stick me straight on the steroids, I believe I will have a quicker recovery without the additional problems caused by trying to reduce pred, I am still swallowing vast amounts of oils, vitamins etc and having acupuncture and the last two acupuncture treatments, very painful as the needles came out, seem to have given me more movement, I was able to get my right leg into the car driving seat without lifting it with my hands! I am still in a lot of pain a lot of the time and find ibuprofen effective some of the time, it takes the edge off it. All in all I am getting slowly better and a tiny bit optimistic! If you have GCA obviously you need to be more careful. i don't think I have it although I have had a funny eye and temple pain before I started the muscle pain, doctor sent me to ENT clinic and camera up the nose revealed nothing so that was that. That is now also improving. Good Luck!