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Pain vs Side Effects vs Damage

Posted , 10 users are following.

julian.
julian.

I've been trying to formulate this question for some time. Its not the full story of course but three dimensions is sometimes different to two.

I was brought up in the days when DNA was being explored. Immune systems entered the vocabulary later, around 1975.

I guess at one extreme we may have untreated debilitating PMR. And presumably potential long term damage to blood vessels and other soft thingies like muscles and hearts.

At the other extreme of mostly contained symptoms there's side effects from medication. Which brings its own potential long term damage.

The overly simplistic question is whether there is a Goldilocks spot. Where the symptoms are sufficiently contained such that they are tolerable and the side effects are moderately acceptable and no long term damage occurs.

I've said no damage but possibly a minimum of combined damage from the disease and the treatment.

I haven't added activity as that complicates further.

I suspect we are all making this sort of judgement continuously, either explicitly or implicitly.

The gap in my knowledge is the potential long term damage from the disease. To put it into perspective, I suspect my tendancy is towards suffering a bit of pain to avoid the pred side effects.

Which brings me to the guts of the question. What is the long term damage from PMR symptoms reduced by pred?

 

1 like, 17 replies

17 Replies

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  • ptolemy
    ptolemy julian.

    Posted

    My sister's godmother got PMR in her 60s and was on steroids for eight years. She is now in her 90s and could be modelling for Vogue she looks so good. She talks about PMR and steroids as something from her past, which has no effect on her now. I have only just discovered she had PMR when I was diagnosed last year.
  • larchan
    larchan julian.

    Posted

    Hello Julian-

    this damade you refer to  would be why I remain where I am-"almost" drug-less.

    I do not take Prednisone/Methotrexate for the simple reason that I prefer the pain - once I convinced myself it was chronic and accepted the fact it was here till it was good and ready to leave.

    I have a moderate amount of medical knowledge- Phlebotomy CLPlb and Clinical Medical Assistant and I know through research that we are damned if we do and damned if we don't use medication for inflammation and pain. 

    I have chosen the tough ass route of toughing it out with a bedtime dose of narcotic and muscle relaxant along with Melatonin all of which give me enough relief to fall asleep and enough morning recovery to get up, gently stretch and get on with it.

    I can't say that EVERY day is cheery, by any stretch, but I can appreciate being in control of my destiny, so to speak, in a way I wasn't while on Pred.

    I don't promote this for everyone because Pred/methotrexate combo has been a life saver for most  and I tried that Tx in the early days and its been 9 yrs for me with no remission and a number of flares but there are side effects for all drugs and I feel better for some reason, with those with narcotics and NSAIDS, than I do with the potentials for Prednisone/ methotrexate.

    My best advice is to do some research- you can find anything online-study the disclosure sheets for any drug you put into your system and ask yourself whether the benefits ( pain and inflammation relief) outweigh the  long term damage potential-ie,cancerand many other diseases, weakened skeletal system (also a problem with muscle relaxants) amongst a host of other uglies. Do for you what you can live with.

    • pam41628
      pam41628 larchan

      Posted

      Hi Larchan,

      i seem to have a milder case of PMR (selfdiagnosed) I've been getting increasingly stiff and achy for years (my husband puts my socks on for me). In Dec/14 I started having sore arms - I sleep for about 2 hours, then get up and alternate heating up a bean bag, next time I wake up I spray my arms with a spray that numbs it so I can get back to sleep. I've been avoiding wheat (but still have a bit most days) sugar, coffee and alcohol. I've been taking Vita D, Udo's oil and turmeric. I take 400mg ibuprofen 3x a day - what narcotic do you take - I would like to sleep for longer periods - but I do find getting up and moving helps.

    • larchan
      larchan pam41628

      Posted

      With my GP monitoring me I take 1 Percocet (325mg) - I have never taken more than 2 even in a flare,and 3 melatonin per night. If I wake up and nothing keeps the pain at bay I try either over the counter sleep aids or a Lunesta (3mg). These typcally give me 4-5 decent hrs sleep per night.-I have learned to make it with this much sleep but confess that sleep deprivation is worse over time than the pain for me I have an electric warming pad on the bed that is on on my side year round.

      I turn down the AC in the summer if needed but heat is definitely my friend.

      Too much Ibuprofen is hard on the stomach and can lead to dangerous bleeding so let your dr know how much you are using.

      I have a heating pad always on my recliner and sleep there some nights if the pain in hips, knees, ankles, shoulders is too aggravating to lay down prone.

      Keep as much mobility as you can do because lack of muscle use catches up with us and causes atrophy- a whole new issue.

      I get up slowly in the morning- I stretch everything out slowly before trying to stand and this helps with pain and stiffness too.

      Always wishing you the best and that you stay a milder case,bless you.

       

    • pam41628
      pam41628 larchan

      Posted

      Thx Larchan. Was that 1 Perocet a day?

      What strength melatonin do you take?

    • larchan
      larchan pam41628

      Posted

      Yes, 1 percocet- 325 mg- on worst days 2. The Melatonin is by Schiff and each tablet is 3 mg so I take 9 mg @ evening about an hr before I want to fall asleep.

      This works for me but I am not guarantee- ing that it is the master fix. When I have a flare I often need more and this is where a tablet of Lunesta helps. I have been at a place in the past though where I needed more help and then my dr and I worked together to find that place where sleep was a must over side affects of any drug. I would recommend if this ever occurs for you that you let your dr guide you to the best way to find rest. Rest is essential to good attitude and life with PMR/Fibro conditions.

       

    • larchan
      larchan pam41628

      Posted

      I used Prednisone when I was first Dx.It made me feel invincible for 6 weeks-however, the rapidity of my dr's desire to wean me off it concerned me.

      Frankly, I am afraid of the side effects, more so than I am afraid of the potential addiction to Percocet- narcotic.

      There are unknowns with any drug and the hazard to our health is considerable so you have to make the choice for you, I believe.

      For me, with the research I have done, I feel I understand what I am doing- with what I do to make life as simple and pain free as I can and I am realistic enough to look to a future accepting the possible compromise to my health along with the benefits.

      For me Prednisone is my 2nd choice and may yet be in my future but the quality of life I have in the regimen I am presently taking is acceptable- I don't expect to feel perfect.

      I have a debilitating disease which will in all likelihood progress but in my 9 years thus far with PMR/Fibro I am managing well and this is what matters to me.

      Even an illusion of control of my health is better than feeling afraid and not enjoying my present.

    • pam41628
      pam41628 larchan

      Posted

      Ouch - 9 years!!! I read somewhere that we could go into remission - or better yet, be healed. Thank you for your ideas. I am very reluctant to go to my medical Dr. (she is very young) I have read too many horror stories about misdiagnosis, and so many tests and so much discomfort, I have my 90 year old mom living with us - who, at present, is in better shape than me. I just don't want to spend so much energy and time - and then find that I'm no better off than I am now.  My own daughter is a GP, and is big on drugs and has little faith in alternative/natural relief. (however, she has now been to a chiropracter whereas before she thought they were not helpful) As well, she is using more vitamins, especially D....Her sister and brother are believers in natural, and her cousin is a naturopath - so, I think they are helpin to sway her.

      Anyway, I think I'll keep up with my wheat/alcohol/sugar free diet, and my turmeric and oils regimen. I'm exercising most days so I wish you a good day and again thanks

    • larchan
      larchan pam41628

      Posted

      Just a quick reference to the Tumeric- my doctor is big on that one and Quercetin both of which I have added to my vitamin regimen. My daughter in law is into natural healing and is very big on using oils in therapy- which oils are you using if I may ask? I might incorporate some at least into a diffuser and also in massage. I applaud your decision to go anti wheat, alcohol and sugar- that's a tough one.

      I took a supplement called Zyflamend for a time and have not decided on it's efficacy for PMR type illness. I, too, had heard their can be a spontaneous remission in our disease but sadly it has not occurred for me to date.

      When I first was ill I had thought it could be food allergy and went to al wellness clinic who put my on an herbal tea remedy-Pau d'arco and a brown rice and adzuki bean diet for a month- alas, it cleaned out my system of toxins but did nothing for the illness. I also had intractable migraine at the time.

      I wish you only the best.

    • pam41628
      pam41628 larchan

      Posted

      Hi Larchan,

      I take 1 tbsp Udo's3.6.9 oil a day, available at the health food store, and 1 to 2 tsps coconut oil a day in my turmeric tea. The recipe for the tea is online - I make it with almond milk and a little honey - quite nice (I also take a turmeric supplement curcamed 750 which has 750 mg turmeric plus i make a tea with turmeric root or turmeric powder)

      I live in Edmonton Alberta canada. Where are you?

      Isn't this forum a godsend!

    • larchan
      larchan pam41628

      Posted

      I live in Lancaster County, Penna. How far apart we all are but equally in need of one another for advise and encouragment.( My son lived a year in Alberta- he enjoyed the chinook winds and the wildlife)

      A close friend who lives in PEI told me of a very soothing chinese tea. It has fresh sliced ginger, dates and a little raw honey. She has MS but uses a lot of the same healing Tx as we would. I am going to try the Udo's 3.6.9.

      If you find anything else helpful let me know. I have a cousin who is a bodybuilder and he recommends Pain Rx made byHi-Tech Pharmaceuticals for sore muscles. The smell is off putting but I do feel they help.

      Blessings.

    • larchan
      larchan

      Posted

      One more thot: Has anyone tried Hemp oil? It is supposed to be amazing for arthritic inflammation and lots of other issues.
  • tina-uk_cwall
    tina-uk_cwall julian.

    Posted

    Ah Julian, there lyest the million dollar question! I am only 54 and was diagnosed with PMR in dec 2013. Prior to diagnosis I simply could not cope with the pain levels and as a otherwise very healthy person my every day life activities had almost come to a standstill. When I was diagnosed and took my first dose of preds my life almost became my life again. When I looked up my condition on line I thanked God that the condition I had wasn't terminal. Then I looked up preds online and when I saw the drug that was going to keep me well was a steriod I cried and cried. There was no way I was going to take this poison!! I then went online to see if there was any alternative natural remedies and although there were some claims of natural remedies when I then researched further was shocked to find that none of them worked and in some cases some were downright dangerous. 

    I then got on the phone to my friend who is a Dr and we speak at least every month. I was crying as I told her what I'd been diagnosed with and she was furious with me for not telling her in previous conversations about my poorly health. Anyway she told me as much about the condition as she knew (she's an embryologist so never comes across this condition). But she said to me that steriods are a bummer! But hopefully I won't have PMR forever and as I reduce the dose there is evidence to suggest that patients are not as exposed to the equal level of side effects with a lower dose. She also talked about our own bodies and that our own bodies produce steriods naturally and when the dose is so low our own adrenal glands will kick back into working, but at the time I could not quite take it all in.

    i want to live to see old age and when I say old age I mean well into my 80's. I often think about wether or not that hope will ever be fulfilled, and am I from now on in be plagued with some medical condition or other. I am also a realist and to a degree I do live for the here and now and I know that if I did not take the steriods my life would not be worth living. I have not suffered from any side effects although having said that only God knows what internal damage is being done but I take prednisolone as per the Bristol PMR regime. I am now on 9mgs and hope that when I get lower and lower and lower doses the less damage the drug will be doing to me. I exercise as much as I can I eat as well as I can and I take additional suppliments in the hope that they will help keep my body stronger and fitter and so thereby help me to fight off what ever else is thrown at me. I am looking forward to the day when I take maybe 7/6.5 preds as I know that that is the level the body produces naturally. Ian extremely luckly in that I experience very little pain whist on the correct level of preds.

    i also hope that over the next 10/15/20 years maybe new kinder drugs, a cure, will be developed and I am not going to psit around in pain waiting for that day to come. I shall just be over the moon when it does. 

    But in reply to your question, my Dr friend says that inflamation causes a lot of long term internal damage, so I think that at the top end of the dose it's 6 of one and half a dozen of the other, then lower doses that cause less side effect damage, we are onto a win win situation, there you go julian, how simplistic an answer is that! All the best, christina 

  • EileenH
    EileenH julian.

    Posted

    It depends how severe it is but since for most of us we don't know how many arteries are affected, the potential of damage from the uncontrolled inflammation in the cardiovascular system is fairly high. Depending on which arteries are affected that can include aortic aneurysm and other forms of peripheral vascular disease. The generalised uncontrolled inflammation increases the risks of certain cancers. All these risks will be reduced by taking pred at an adequate dosage. There is some dispute as to whether managing PMR aggressively with pred reduces the likelihood of the PMR progressing to full blown GCA but if it does turn into GCA, as it does in 1 in 6 patients with PMR, then without aggressive treatment  using pred there is a high chance of going blind, the rate of aortic aneurysm is increased anyway but is increased even more in untreated GCA. GCA can lead to stroke and cardiac damage - sometimes fatal. Depending on how far the GCA spreads there can be other sorts of ischaemic damage (damge due to lack of oxygen supply) and if it affects cranial arteries (head and brain) then it isn't unreasonable to expect it to contribute to dementia. 

    That's just off the top of my head - there may be other stuff that hasn't come to mind or I haven't come across in reading.

    There are 82 pred side effects, no one gets them all, many of us get very few. As my duaghter said yesterday: Where's the point of not medicating properly because of a theoretical potential risk when the reality of now is such a poor quality of life? In the case we were talking about there is a very real risk of death from asthma - and to some extent there must be a small risk of death with large vessel inflammation such as GCA and PMR. Alternatively - what is the point of telling me I can't take pred because I might develop osteoporosis and break a hip when the alternative is years of inactivity due to PMR (I've had it for 10+ years) which is an even higher risk factor for osteoporosis plus the patient is very unstable when walking and at increased risk of falls.

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