The rheumatologist and GP’s don’t know what to make of me as I tick all boxes for PMR except I am 49 years old. I’m awaiting PET/CT scan results but the pain and stiffness is very real! I had an early menopause (38) with autoimmune ovarian failure and my immune system issues so Pred will be extremely problematic for me. I’ve gone from being a very active Mum to a very sore, more-or-less crippled shadow of my former self in the space of 2 months. I’m doing all I can to keep my head up and my mind-set good.
Has anybody here had any success with herbal tonics?
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Tpots
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Hello there. So sorry you’ve got all this to contend with as well as being a mum! Would mind telling us a bit more about the immune system problems that make Pred a no no for you?
People do try herbal remedies and other approaches but so far we’ve not heard of anyone for whom it replaces Pred. CBD oil seems to be the rage at the moment with varying results; some say it’s great with their Pred. However, I do worry that because Pred is a well known drug with well documented side effects, that somehow other remedies with not a fraction of the same history or research and therefore no scary list, are seen as less injurious. Just because it’s not documented doesn’t mean it is safe in the long term. I’m not anti alternative treatments, just cautious.
Hi there. Thank you for replying. I have an autoimmune history as follows... Premature Ovarian Failure at 38, Coeliac Disease, Pernicious Anaemia. Also a peptic ulcer. Because of the early menopause I am prime for Osteoporosis. I use CBD oil and it’s just beginning to offer me some mild relief. I’ve removed wheat, dairy and refined sugar from my diet and take turmeric, magnesium & calcium supplements. I’m also having weekly acupuncture but it’s all proving very expensive!!!
Exactly - even my approach which cost far less was only available to me because of where I lived and my income from work. Pensions only go so far now! Other than the acupuncture and and the turmeric (can't take it for medical reasons) I have done the rest you do and it got me nowhere so back came dairy.
But little of that says you can't use pred. The bone density stories are not entirely true: my bone density had barely changed in over 7 years on pred, mostly above 10mg/day, and there are several others on the forum with similar stories. Coeliac is sometimes managed with pred, PA has nothing to do with pred, it is managed with B12 shots, osteoporosis, if it really is a risk, can be prevented with medication.
All good info. Thank you very much. There’s so much scary stuff written and talked about with Pred. I just want a realistic view on all possibilities. I will keep an open mind. Thank you
Many people with PMR , GCA , or a number of autoimmune related diseases and syndromes are on the forum , and use various " add on " therapies and supplements , but the majority of them use Pred , because although it is not a " Cure" it is the most efficient and successful drug to bring down Autoinflammatory and Autoimmune related inflammation.
Most Autoimmune sufferers with varied autoimmune syndromes ( they seem to build like a tower of cards ) use some form of steroid treatment to manage their symptoms , in the most cases Prednisone or its variants is the prescription , unless they also have other conditions that need a different steroid variant to control all the types of inflammation.
Sometimes it is combined with things like Methotrexate or Azathioprine , depending on your conditions , but unless you have a specific intolerance or allergy to these treatments it should not be that you can't use it.
Exercise , Supplements , other Pain medications , Diet and Lifestyle changes all help to reduce the effect of PMR and keep you stronger and with less side effects from your medication , and , can help speed recovery while the PMR is active in the body , but the Steroid Treatment itself is the thing that allows you to move and get out of bed so that you can actually take advantage of these Holistic approaches.
Anybody whom cannot take the Steroid Therapy for various Medical reasons will admit that it is seldom by choice but because they have to do it that way , and that it's makes coping with PMR difficult and painful and much harder on the Body and Mind .
If you have a diagnosed intolerance or other condition that means that steroids and steroid sparers can cause problems for you , you may be able to get prescribed biologics . But this is hard to get treated with unless you have problems with the all drugs or they do not work at all . The steroid sparers above are usually tried on your first.
I am still waiting for approval after over a year for an appropriate biologic having to get both a local confirmation of my Connective Tissue Disorder , Ehlers Danlos diagnosis, and it's Typing , and acceptance of the increase in my symptoms of my EDS and POTS because of steroid use before the drug can be approved , because I only have a mild intolerance to steroids and not a severe allergy.
Steroids may be a friend with a sting in the tail , but on the whole , if you do not have a medical reason not to take them they are really the only drug , prescribed or supplementary , that will efficiently get rid of your pain and allow you to function day to day.
The alternatives can sometimes give worse side effects than the steroid therapies and are often not as reliable in controlling the condition either.
Do you have a medical reason or allergy which means you cannot take Steroids ?
I had early menopause due to cancer aged 41. Just before diagnosis with GCA aged 54 (which PMR can develope into) I was found to have extremely low vitamin D levels, which would have also contributed to a 10% bone density loss when two DEXA scans were compared. I had to start on 60mg Pred or lose my sight, I didn’t quibble. PMR doses are a lot lower and any person with GCA would be cock a hoop about starting that low and by hitting PMR now you reduce the threat of developing into GCA. I do wonder if patients were properly taught how to actively manage and/or prevent many Pred side effects, that there wouldn’t be so many problems with it.
Wow. I hear you. Thank God you got things under control. Yes this is very new for me and I’m very green about all of it. I will be checking my bit D and I’m scheduled for a DEXA scan. At least here there’s a wealth of information to hand. I will find out all I can about managing side effects. Thank you again for sharing your story. Such a help!
We frequently have people come on the forums and tell us they can't or won't take pred and are going to do it the natural way - I only know of one who persisted and who says their PMR has gone away after 4 years. But PMR often goes away after that sort of time anyway. The pred is only a management strategy - but the only one that works.
I had PMR for 5 years without pred - I had various strategies that kept me upright and semi-mobile. And early in the day aquafit class in a warm pool meant I could move enough to do a Pilates or Iyengha yoga class - both heavily adapted for me - both of which helped a lot. But I got all that in an off-peak membership of a local gym and I worked freelance from home so chose my hours and had the money to pay the membership and run a car to get there as it wasn't an option with the bus! Warmth helps - electric blanket BEFORE getting out of bed, sitting against a radiator, stretching in a warm shower first thing, Pain killers rarely help except to take the slightest edge off the pain,
I don't see why pred is such a no-no - PMR is also an autoimmune disorder and the pred is there to suppress the immune system. As are all the other options, none of which replace pred necessarily but may help get to a lower dose of pred, all of which are even stronger immunosuppressants than pred with all their attendant risks.
Just to give you some ideas about how you can manage the potential bone thinning effects of pred have a look at my story: healthunlocked.com/pmrgcauk...
Once you are on a pred dose which has kept your symptoms well controlled for at least a month then begin a very slow taper. Don't be tempted to speed it up because that may lead to a flare causing a higher overall intake of pred. I started at 15, June 2015 and a year later I was at 3. I had achieved 5 mg, which is a level where most side effects become negligible, by about the end of April 2016 if I remember correctly. Have been kept well for most of the past few years with a dose between 2.5 and 1.5, and finally seem to be progressing successfully to one. The first winter I did succumb to more colds than usual, and small injuries like cuts took longer to heal. By the second winter at the lower dose I was back to my normal. Admittedly I don't have the immune issues you are dealing with, but with patience you may be able to achieve the best of both worlds - low dose pred giving a good quality of life but not making your susceptibility to infection any worse.
Would your doctors be prepared to allow a trial of a week or so on steroids, say 15mg, to see if they had any effect? You could stop them immediately if they did not work.
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