Hi. I've recently been told I have pmr.altho I'm not experiencing pain just heaviness and overwhelming feeling of my upper part of body.. I've not talk to go as yet but diagnosed over phone after blood tests....can anyone please explain early stages of pmr..many thanks Gail.
Hi Gail63312 - We all experience the onset of PMR in slightly different ways but the overwelming effect is muscle pain in all of the major muscles - legs, arms, shoulders neck etc, this usually is worse in the morning when you 'try' to get up. Personally I found this the most difficuilt time - had to force myself to move even if in pain and after around half to three quarters of an hour it subsides. If you have been diagnosed the usual prescription is Prednisolone (Steriods) - the start dosage is around 30mg and if the symtoms 'disappear' within hours or max 48 hours, along with the bloodtest are a good indication you have PMR.
Hi John. Many thanks for your reply. So will this affect my job. ..I see my doctor tomorrow and very nervous of what he will tell me. I guess as I feel well I can't imagine this affecting my life...gail
Hi Gail- Mine was pain and stiffness in hips and shoulder area at first, inability to lift arms and spread legs and twist head from side to side. Inability to get up after sitting down or even sitting down without help. I also experienced a very slighly elevated temperature for a 2 days or so, prior to the onset of pain. It was barely perceptible, but felt flu like. Eventually, I had swelling in the wrists and could not move the fingers in my right hand. The pain was unrelenting and no over the counter medications helped significantly. Blood test showed elevated CRP and SED (ESR) rate. The diagnosis was confirmed when a dose of Prednisone (mine was 20 mg) got rid of the the pain and most symptoms within less than a week. I had a frozen shoulder, but got rid of it with PT. I am now on 9 mg after 10 months. My SED and CRP are normal, now. It differs for each person. Hope you feel better, soon. Good luck.
Once I was on Prednisone, I was able to work a normal work schedule. I was actually super energized on that dose of Prednisone and pain free. However, my job is sedentary and does not require a lot of physical effort. I guess I felt 'normal' again.
Hi, once the preds do their work you should be able to get back to 90% or better. I was back on my bike and working in the garden but I have found I have slowed down - I suspect due to the medications. Work at a pace you feel comfortable at and don't overdo it! Because it's a long haul which requires an attitude change which I found hard at first - we have to accept and live with it - best of luck.
Hi Gail, I have had PMR for 14 months and went to the Dr. as I thought I woke up a differant person, fairly painfull from neck to knees. Once diagnosed, I was on pres. 20 mil. sid affects for me started in 30 days but very little pain after about 5days on pred. I have had most of the sisd effects and more, I am sencetive to meds. Unfortunitly I have also be diagnosed with spinial stenosis whic is very painful and I need an operation. My SED rated did not start spiking until 5 months after I was on Pred,. I am still having trouble getting it under control, but that is not always the case. Stress effects you , so keep that in mind. You could easly slide through with not too much trouble. I wish you luck.
Thank you so much for explaining...i guess before long il know exactly what pmr does....I'm concerned re weight gain on pprednisone and has anyone tried manuka honey...i have been recommended a one a day tablet...again thanks so much.
Hi Gail,
Mine also began with pain in my hip, then rapidly going to both hips and shoulders, pretty much the same as others described. However, as I read about the potential serious side effects of Prednisone, I chose not to do steroid treatment, and instead chose homeopathy. Today 3 years later, I have minimal pain which is easily controlled with a couple Ibuprofen each day and my overall health and immune system are better than ever. I understand that had I taken steroids, they would have shut down my adrenal glands, the major support for our immune system, within 2 weeks, and it is difficult to get them working again after years on steroids. Also, my eye doctor told me that my very tiny cataracts would have grown and needed surgery had I taken the steroids. Very grateful for my homeopathic doctor. Wish homeopathy was more prevalent in the US where I live; I understand it is more available in the UK.
Wow that's fantastic news....and yes i will try anything before steroids. ..glad yr well and minimal pain...Thank you so much..gail
My weight is what it was prior to getting sick. I lost about 7-8 lb prior to being diagnosed, now I am back to normal. This is what I do: Try to walk everyday, do yoga, not eat sweets or too many carbs, eat a lot of calcium rich food. As mentioned, I have a sedentary job, so I take breaks, get up and walk around. I drink 2 liters of water daily, so around 64 ounces. Take fish oil and take calcium+magnesium+ Vit D to supplement when what I eat does not add up to the necessary amount. I also take Vitamin D on doctors advice and based on a blood test that determined my Vit D level.
Thanks Paula for that...I have struggled with my weight all my life and stay around a 16 dress size but was so worried of increasing weight...I'm office based sort of apart from My medication rounds but I work 12 hour days and nights and wonder if it will be to much....I'm scared of living with an illness altho my family has had fair share so I have to get use to this but will take time I know and having you guys to talk to is so reassuring for me as I'm sure everyone one else...much appreciated as I don't feel alone..Thank you.
Good homeopathic doctors have told patients that there is nothing they can offer for PMR. Pred is the only real alternative to suffering the pain and stiffness until the underlying autoimmune disorder burns out. The usual starting dose of pred with PMR is 15mg, a moderate dose and you then taper it down to the lowest dose that controls the symptoms. There are 82 listed side effects of pred - no one gets them all, some people get few or even none. I put on weight for the first 5 years I had mild PMR because I couldn't exercise - I didn't put on any more with prednisolone although it did redistribute itself to my middle! I have no sign of diabetes or cataracts. I have had raised blood pressure - not from the pred though, it was already there in the pre-pred days, just not identified. In the last year or so by careful diet awareness I have lost 16kg - whilst on pred. I rarely get colds or other infections - I did apparently have urinary tract infections - it wasn't, it was endothelial cystitis which is common in PMR.
Long term inflammatary states in the body can increase your risk of some cancers - using pred to reduce the inflammation reduces that risk. Some experts also think it reduces the risk of you developing giant cell arteritis, a more serious form of the same vasculitis that causes PMR where unless you take pred at much higher doses than for PMR you run the risk of going blind.
Pred does not "shut down the adrenal glands" - they stop producing cortsol because there is plenty of artificial corticosteroid in your body after taking the pred so they don't make more - like your central heating boiler doesn't switch on if it is warm in the house. Once you reduce your dose below about 10mg the glands start to produce small amounts, increasing as the dose gets lower. The majority of people get off pred and are fine. A few people find their adrenals don't function properly and then need a low dose of pred for life - but that is replacement therapy just like insulin for diabetics or thyroxine for people whose thyroid doesn't work. They would almost certainly have been diagnosed with problems at a later stage anyway.
And last, but by no means least, ibuprofen is NOT sweeties either - one lady with PMR was told by her GP to take it for the pain and stiffness. After 3 doses she was in A&E with a gastric bleed - a very dangerous and unpleasant experience believe me.
Pred is not all bad - used properly and carefully it will almost certainly allow you to get back to work at some level. Care with what you eat will help avoid weight gain - some people even lose weight! Don't dismiss it out of hand - especially if you need to work. People have claimed they have dealt with PMR by diet and other options. But most of them have had time to wait for the PMR to burn out and haven't had to work for a living. I've had PMR for 10 years - I've done the no pred way, I've done the pred way. No contest - pred gave me back a pretty well normal life despite a few hiccups.
Thanks Eileen I have read some of yr posts already and give sound advise...I have doctors tomorrow and will see what he suggests again thank you .
Hi Gail, about a year ago I noticed that my shoulders and arms felt heavy and I had a hard time taking off my clothing and such. It took a few days....and it went away. PMR started slowly with me, and as of late I am dealing with back pain. The very painful shoulder pain resolved itself after the PMR diagnosis by my GP and taking prednisone. It's tough but manageable with the right amount of prednisone intake.
Good luck and a good doctor is important. This forum offers great advice which has helped me! It is excellent!
Erika
Eileen...so good to learn from you who has and is going through the same. I printed out your response to always be able to read and inform myself.
By the way, the full prednisone amount of 25 mg is working much better for me.....and not the divided dosage. Thank you input.
Erika
Eileen, I took Ipuprofen a few times ----while on prednisone ----and I experienced a TERRIBLE stomach pain. I had to take Aloe Vera gel to calm down the stomach. Not good.
Would Aleve have the same effect and cause ulcers and bleeding?
Thank you for your opinion.
Erika
I got a bleeding stomach from taking Ibuprofen and Aspirin for about a month to relieve the PMR. I got anemic and even weaker on top of the horrible pain. An endoscopy diagnosed the bleeding and I was on a bland diet for a while and started taking Pantoprazole 40 mg in the mornings. I replaced those with Tylenol (Paracetamol in the UK, I think), which was pretty useless and can cause other problems if taken too often or for too long a time. Eventually, I was diagnosed with PMR and found blessed relief in the Prednisone.
Hi Eileen,
I have appreciate the information you've provided when you've given citations to other articles. I would like to know where the citation is to 'good homeopathic doctors' who say they cannot treat PMR. The doctors I've seen are all MDs as well as classically trained and well known homeopathic doctors and the one I am seeing now has studied with a leading figure in homeopathy from Greece, so I believe my sources are knowledgeable, and they have treated me successfully with homeopathic remedies.
I have been a member of several forums for PMR and at least 2 patients have told us they sought homeopathic advice when their PMR was first diagnosed.