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Tinapoly1 Tinapoly1

My Polymyalgia Symptoms but Giant Cell too?

My PMR symptoms came out of no where when it attacked my pelvis/hip area so bad that I would scream initially when getting up,sitting down,or walking a few inches.My C Reactive Protein went from 50 to 90 to 94.8 which is off the charts since an 11 would have been bad. This went on for 3 1/2 months until my rheumatologist put me on Prednisone and in 2 days I could walk again but 6 months later I'm on 5mg in am & 2 1/2 at night.Even on steroids my tongue swells up with sores on the side 3 to 4 times a month,my teeth hurt like hell when I have anything cool or cold, my palms & 3 of my 5 fingers on both hands have tinglings & numbness several times a week & my friend said disease is attacking ulnar nerves which is what is causing the hand numbness.Once my C Reactive Protein finally went down months later to 6 my dr.told me to stay on 5mg in am but skip the 2 1/2mg at night. Overnight I could hardly walk & day 2 the disease attacked my shoulders for the 1st time so back on pm dose again but shoulder pain never went away on right side. I have gained 50 lbs. in 6 months & my feet & tree trunk ankles are gigantic. I eat less than ever but continue to gain a little every week ??Do any of you have so many weird symptoms & for those who also have the Giant Cell too, did you have the biopsy of the temporal arteries near the ear or did they just go by symptoms? It terrifies me that you can go blind from GCA.  Thank you ! Tina

 

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  • e50553 e50553 Tinapoly1

    Hi Tinapoly1 -- so sorry to hear of your struggles  -- I am not a doctor and I can't speak to your personal symptoms (esp re the GCA) but you might be interested in my post about NO prednisone -- you will have to do your own research -- and I would do it intensely and be alert to any cautions -- your symptoms are much much worse than mine -- there are natural inflammation reducers that work with less (or no) side effects -- I seem to recall that you can do it while on the pred.  Someone suggested that too high doses of turmeric can cause anemia but my doctor wasn't too worried about that for me personally -- BUT again -- do your own research.  Here are my lab results -- note that I was on boron, turmeric and serrapeptase for roughly about a month when I got the good results.  YOUR CRP WAS off the charts!!!!  P.S.  These natural things are generally much slower than prednisine so approach with care.  I am still struggling but see many little improvements weekly. 

    C-Reactive Protein Norm (per my lab) is <=0.29 mg/dL

    5/10/17   12/6/17  1/5/18   3/22/18   5/10/18   5/29/18

     0.33        8.52      18.20     3.75        2.37        1.09  -- 

    P.S.  it looks like your lab gives results differently from mine

    • EileenH EileenH e50553

      It is important to emphasise that this sort of approach alone is definitely NOT advisable for patients with any suggestion of GCA. It is fair enough for PMR as there is no serious risk involved when it takes a bit longer to resolve. However, not reducing the inflammation in PMR does increase the risk of it progressing to become GCA and then your sight is at risk if it affects the blood supply to the optic nerve. Then the only safe answer is pred to reduce the inflammation very rapidly.

      There is no real reason why this approach shouldn't be used in tandem with pred in GCA but should only be done after the approval of your doctor.

    • Tinapoly1 Tinapoly1 e50553

      Thank you e50553, While on these natural supplements did you go off your prednisone slowly and are you still on a low dose ? My problem is that I have such a bad GERD problem along with a congenital defect in my esophagus where the prednisone stopped there 4 times and can eat a hole in my Shatzki's Ring blood vessels which can be life threatening .It felt like someone put a knife in it but when it does make it to my stomach most of the time ,within 10 minutes I have a giant acid ball come up in my mouth & choke on it at times. I have noticed that at times it had watery blood too which is scary when I read how long I might be on this drug, The problem for me is that I also had major problems with GERD when I tried turmeric prior to PMR since I heard of all the health benefits so I had to stop right away & I can't take the GERD meds. anymore. Yes ,my c reactive protein was off the charts for over 3 1/2 months when it finally topped out at 94.8 and I was told that I was lucky I didn'r have a massive stroke or heart attack. I pray it didn't damage my blood vessels to give me GCA but with it being left untreated for so long I am very fearful of that since my eyesight is more precious to me than anything.   Thanks again, Tina

    • e50553 e50553 Tinapoly1

      HI TINA -- Your situation is so much worse than mine and I am so very sorry for all the suffering you have had to endure.  Unfortunately, I don't think I have any recommendations for your issues.  Just to clarify, please note that I was not recommending you go off of prednisone ESPECIALLY IN LIGHT OF YOUR GCA.   I think my comments may have been misconstrued by some and I apologize for that.  Also just to be clear to other readers, I am being monitored about every 5 weeks or so by my doctor who always does blood tests.  I am doing the boron, turmeric, serrapeptase regime under doctor supervision.  I did not try the low dose naltrexone that was recommended b/c I was afraid it would exacerbate some other issues I was having.

      Anyway, I did prednisone for just a few weeks (10mg) -- just so I could be diagnosed with the PMR -- not long enough for my body to get used to it and then started with the other things under this  integrative doctor's care.  I have a lot of other health issues that prednisone would absolutely make a worse mess of than what I've got so I was scared to do it long term. 

      Yes, our bodies and all the various complications make a big difference in how each of us reacts to various meds and natural products.  My neighbor had PMR a while back for 4 years and didn't seem to suffer any ill effects from the pred.  She had to be on the pred b/c she was suffering from GCA and had to go off of it very very slowly.   So far, its been several years and she has not relapsed in any way.

      I live in Virginia, USA.  I don't know where you live or what kind of a doctor you have access too, but I have found that a blend of allopathic with naturopathic combines the best of both worlds and has worked for me for the last 20 years.  I have also found that even with my integrative doctor I - personally - must do a lot of research on whatever issue I have in order to work with him most effectively.   I did try an allopathic rheumatologist for my PMR, but that was probably the worst doctor I have ever encountered.  She didn't even give me a physical examination.  Nor was she concerned about my medical history at all which is vital if she was going to put me on predisone.  At the time, I was in a wheel chair and could barely move my arms.

      For my research, I usually start with www.earthclinic and then read as many scientific articles and various blogs as I can find.  I weigh everything.  Oh, and I never get vaccines of any kind b/c there is scientific research as well as personal testimonies that vaccines can be one of the triggers for PMR, especially in elderly women.  Articles I read noted that most of the women were in their 80's. 

      Tina - I hope you will be able to find some solutions to your many painful issues and I hope there is someone on this blog or elsewhere who will have better suggestions than I could offer.

      Blessings, e

    • Tinapoly1 Tinapoly1 e50553

      I am very grateful for everyone's input on this PMR & possibly GCA. You give me great hope telling me about your neighbor being in remission from GCA for several years now but I sure hope it won't take 4 years total to slowly go off the prednisone since I am having bleeding problems for a while now after just 6 months. I am soon to be 64 and I'm from Hollywood,Florida. I also worry about my bones since I had major osteopherosis at the young age of 37 when a moron GYN. took my perfect ovaries out after seeing I had no cancer or endometriosis but andenomyosis which would have been a 100% cure just taking out the uterus only after 4 years of severe uterine pain. I had a  horrible reaction to every form of estrogen and got osteopherosis within a year along with fibromyalgia, Shojorn's,Hashimoto's,& tinnitis. It took me years of IV's to get my bones back & after watching my father who was a surgeon loose his ability to operate which forced early retirement & the 20 years on & off the prednisone he died a horrible death with a broken neck, fractured spine,and broken ribs from just coughing so this drug really scares me but I have to take it and hope for the best. I didn't get a vaccine this past year but I started a new thyroid drug for my Hashimoto's Thyroid Disease Synthroid is no longer working so I tried Cytomel and that week months ago I called my endocrinologist & said something terrible is happening to me. It not only was causing rapid heart beats but arrithmias too in addition to my initial PMR reaction the 1st week. Maybe it was a coincidence but I will never know. I also have a rare disease eating my left knee which there is no cure for the diffuse PVNS. It came back in 4 months & I am worried about my weak immune system from the Prednisone since it will help the disease get stronger.After many surgeries with it coming back for most when it is in the knee ,amputation above the knee is the only sure cure. Sorry for rambling on and thank you for sharing your story with me. When I get something new I read like crazy to educate myself on it . Do you know if your neighbor have the temporal artery biopsy to confirm her GCA ? Take care & thanks again. 

    • EileenH EileenH Tinapoly1

      Why not speak to your doctor about having depot-medrol injections to manage your PMR? They are now included in the recommendations for the management of PMR:

      https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

      Recommendation 5 is the relevant text.

      I have paroxysmal atrial fibrillation - and it was almost certainly caused by the underlying autoimmune cause of the symptoms we call PMR attacking the electrical cells in the heart and it started within a short time of the PMR symptoms appearing. It is very well managed most of the time but interestingly, recently I had reduced to 7mg and after a couple of weeks realised the a/f was back every afternoon. It was much better at 8mg, just occasional episodes, and at 9mg it was entirely gone. The rheumy just looked baffled!

      Something else to discuss with your rheumy might be trying Actemra if you do not have any contraindications for it. Quite a few doctors in the USA seem to be able to arrange funding for using it in patients with PMR (it is very expensive) although it is approved for GCA and no official clinical trials have been done for PMR. 

    • EileenH EileenH Tinapoly1

      The biopsy only confirms the diagnosis when it is positive - and negative result does not mean you don't have GCA, it only means they didn't find what they were looking for and that happens in nearly half of cases  - there are many reasons for it including the GCA is affecting other arteries but not the temporal one.

    • Tinapoly1 Tinapoly1 EileenH

      Hi Eileen, I have read that the biopsies of one of the temporal arteries for GCA can be negative even though you might have it & that it might be in the other temporal artery or they just missed getting the giant cell biopsy by a tiny bit  .I think that not being on prednisone for 3 1/2 months during the initial PMR attack, with a c reactive protein that is off the charts at 96.8 when normal is about 1 through 8 , did some major damage to my arteries and blood vessels so I presume I have GCA.

      Thanks Eileen !

    • Tinapoly1 Tinapoly1 EileenH

      When you say you are on 7mg, are you referring to the dept medrol injections ? I struggled trying to read the fine print from the article & gave up since my strong glasses aren't working very well these days but I very much appreciate it. So you are on that for a.fib.only?  Are you on Actemra too with prednisone ? Not sure what GCA stands for but guessing it is like the FDA in America which is very strict & wants testing & trials done for years on new drugs. 

    • EileenH EileenH Tinapoly1

      No, I am currently on 9mg and I use Lodotra/Rayos, a special delayed release form of prednisone which you take at night so it is working in the morning. I'm not on Actemra, though it has been mentioned. I don't live in the USA though.

      I was suggesting maybe you could try Depot-Medrol because of your gastric problems. Or Actemra would probably get you off pred or to a lower dose faster.

      I'm a bit confused, in your first reply to me you say "... did some major damage to my arteries and blood vessels so I presume I have GCA" having spoken about PMR & GCA in previous replies and then in your last reply ask what GCA is! GCA is giant cell arteritis, the thing we are talking about here. 

       

    • e50553 e50553 Tinapoly1

      Hi Tina - I hope this post doesn't duplicate itself.  I lost my first response so am trying again.

      I don't know if my neighbor had the biopsy -- I will ask her.  I do know that she had all the physical symptoms -- severe headaches, etc. 

      I too have hashimotos and am struggling to get that fixed.  My endocrinologist said I essentially have no thyroid b/c inflammation of 30 years has so scarred the thyroid it is not doing anything.  That is one reason why I am interested in the scar dissolving aspect of serrapeptase, My regular doctor told me (I have not researched yet to confirm) that even if you have a smidge of your thyroid left, it can regenerate.  Hmmmm.  I haven't taken synthroid for 20 years because it makes me unbelievably, non-functioningly depressed. And that is on a tiny amount of it. I used to take armour till the government stepped in and made them change the formulary -- don't know if that was ever reversed.  Now I take naturthroid b/c the WP has been discontinued at my pharmacy.

      Serrapeptase has been used for 30 years in Europe and has hundreds upon hundreds of scientific studies and there are just tons of personal testimonials.  I think, however, one must use a high quality version to be most effective.

      I looked again and found that many people do use serrapeptase along with prednisone BUT, BUT, BUT -- this is an individual thing and must be done -- esp in your case -- with great knowledge, care and doctor's help.  And I also read again where when taking any natural supplement, one must start slowly. 

      I don't take any mainstream pharmaceutical drug if I can help it - there are just too many complications.  The last one I took for candida just about killed me.  That being said, my husband had a severe tooth infection and took 2 antibiotics, had the tooth pulled and was fixed and is now fine.  My Mom = who is highly and severely allergic to most pharmaceuticals, took the same candida drug as me and had no issues.  Everything is relative to the circumstances, etc.

      I found my other lab charts from the hospital lab i go to.  Note that I had been on the three (boron, turmeric, serrapeptase) for about one month right before my labs.  I had one dramatic drop in inflammation and then 2 consecutive small drops.  I still have some immobility and slight pain but it is NOTHING compared to the excrutiating pain and debilitating immobility of December until March when the inflammation went down so dramatically.  My biggest complaint right now is total lack of energy except for a few hours in late afternoon.  That could be PMR or my thyroid or some other issues.  We (doctor and me) haven't been able to get to the bottom of it yet. 

      Here are my labs from the hospital. Note that all labs report things differently.  The sed rate went down 25% in one month, then had come down about  60% by the end of three months and the CRP went down an incredible 75% in one month, and 90% by the end of the three months .  And this is without prednisone.  Will this work for everyone -- not necessarily -- but for me personally, just addressing the inflammation issue of my PMR, it was tremendous.

      Sedimentation Rate  Standard Range  (per my lab)  0 - 20 mm/Hr

      6/22/16     5/10/17     12/6/17     1/5/18     3/22/18     5/10/18     5/29/18

        14.0            19               92           103           76              55            41

      C-Reactive Protein Norm (per my lab) is <=0.29 mg/dL

                       5/10/17       12/6/17     1/5/18     3/22/18     5/10/18     5/29/18

                         0.33             8.52        18.20        3.75           2.37          1.09  

       

    • EileenH EileenH e50553

      The evidence for serrapeptase is very mixed - and while there appear to be many scientific studies - what claims to be a scientific study may be no more worth than me writing a letter to a newspaper claiming something works. This is an independent review of the studies and assessment of their value.

      https://examine.com/supplements/serrapeptase/

      Like all such supplements - it is probably a case of suck it and see but there are some people who shouldn't use it as it interacts with any substance that can reduce the ability of the blood to clot.

    • e50553 e50553 EileenH

      Yes, it all depends on who is vetting the product and/or paying for the "independent "study -- U.S -- who is johnny-come lately and up against the pharmaceutical giants or doctors, scientists from other countries who have actually been using it with results for thirty years.  I always remain skeptical until I have looked at a number of sites by various individuals.

      I do agree that there can be a possibility re the blood clotting issue. 

      Boron is a good example (of many) and I believe one of the other posters mentioned the scenario where a scientist discovered tremendous effects of boron (which is a part of our bodies' makeup and in which we are grossly deficient) -- he naively sold the rights to it to the pharmaceutical company who immediately shelved it.  Here is one article -- apologies as I don't have time to find a more concise one.  Note: with Boron, it detoxes your body so it must be begun SLOWLY and in consideration of any other stuff you might be doing,

      http://cheflynda.com/2015/03/the-inexpensive-arthritis-osteoporosis-cure/

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