Checking in for the first time

Checking in for the first time

Dear All,

Once upon a time (some 25 years ago) when I was a keen gardener, I developed a HUGE thumb joint, took a blood test, and was told by the GP that I had, in his words, 'arthritides' floating about in my blood. I had no idea what that meant, and by the time the results came back my thumb had stopped swelling and hurting, so I thanked him cheerily and forgot all about it.

For the last 25 years I have enjoyed a wonderfully rich life which has included Tango and Blues dancing (for fun), the continuation of a singing career, and the practice and teaching of Reiki, which has undoubtedly changed both me and my life in the deepest of ways, and still does so.

Since the menopause I have been experiencing all kinds of skin problems, which I put down to thinning, very dry skin. About a year ago I began to feel uncommonly tired and became prone to infections, and this I put down to dancing until 6am, plus hanging out with a delicious grandson who has been delighting the whole family with every germ known to man, it would seem! Then six months ago I began experiencing swelling, heat, and discomfort in the joints of my wrists, hands and feet. This I put down to - well, I hadn't a clue (although I did remember my gardening thumb). All these things improved with daily Reiki treatment, a bit of attention to diet, and more rest: perhaps living life like a 21 year old isn't on at 66, I thought!

Then in October last year I received a call from the haematology team at my local oncology unit. When checking routine bloods for something else they had found a raised white cell count and increased lymphocytes of the T-cell variety. Ho-hum. Suddenly I was in a machine that began to roll. A bone marrow biopsy showed mono-cloning of T-cells, indicative of lymphoma or leukaemia but a CT scan showed up zilch. It was a fear-inducing process, truly stressful, but I didn't 'feel' that cancer was the issue, although I appreciate it could be in the future.

I did my research. Cloned T-cells can also, it would seem, be found in something called RA! So I began to follow that road of investigation with a wonderful Rheumatologist at my local hospital. And yes, I have the beginnings of RA or, more likely, PA (dermatology appointment awaited).

I began on 15mg of Prednisolone, and within 5 days - yes, FIVE days - I was completely back to normal. I have tried (and failed twice, and most dismally) Sulfasalazine, and am supposed to begin on Leflunamide, BUT... a drug that hangs out in your system for TWO years when you stop taking it? That needs to be 'washed out' in an emergency??

I have read with gratitude all the wonderful posts on this site, including the ones which say, 'you don't always hear about the successes because mostly people are posting when they're in trouble'.

So, here's my thing. I understand that RA/PA is incurable and that the long-term results can be wantonly destructive. I understand that the meds available can help to put the disease into remission at best and ease it at worst. I understand that it may take the trying of many different meds to find the one or ones that are right for each individual. I understand that I'm in the early stages of disease and thus it cannot yet be known how it will progress in me. I understand that not treating the disease puts me at risk from other diseases, including lymphoma and leukaemia. (I've been asked to dial in a blood test in August for these.) And heart disease, stroke, lung disease...

The upshot of this story is that I am now on 5mg of Prednisolone and will be gently reducing to nil over the next couple of months with the support of my GP, and that I'm giving myself six months to explore all options that don't include drugs which make me feel worse that the disease itself! I may fail, and I may yet have to face taking toxic drugs administered with the best of intent and with my best interests at heart. I am not in denial, I am not an 'anti-orthodox medicine' Reikimaster, and (despite a contrary opinion from friends) I am not daft!

So, thank you for listening to this long story, for properly hearing me, and for being here: it has been wonderful to feel that my dilemma, to be medically treated or not - or if so, how so - will have been experienced by so many of you. All thoughts, advices and comments will be welcomed, and regardless of what goes off or what I decide, I'll be reading all your posts.

With respect and gratitude. :)

15 Replies

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  • Hello there.

    I've been up half the night caught up in election fever. So I hope you don't mind if I just condense my main thoughts ......

    These toxic drugs of which you speak, well my experience is that they are less toxic than the disease. Uncontrolled systemic inflammation, which is what happens when the immune system loses the plot, is pretty much a toxin in itself, that's how I see it and I think that's correct. It's not as if the starting point is a nice healthy body into which we pour chemicals.

    I was very drug averse before being diagnosed with PsA but I came to feel as if the disease itself was poisoning me. Even leaving aside the pain, stiffness and swelling, the absolute exhaustion and lack of interest in life made me realise that my body needed serious help. Since starting the drugs, and especially since starting biologics, I look and feel better in myself and the disease is well-controlled. I feel that the drugs have helped to ADJUST my body and that now I'm more like I should be, though it's still not easy-peasy.

    To my great surprise the drugs don't make me feel worse than the disease itself. It can be trial and error with drugs and quite a few people do get side effects to various degrees of course, but as one of the lucky ones who has experienced few adverse effects I can say that the drugs don't necessarily come at a price. That's what I assumed in the beginning, that there had to be some sort of pay off and that what the drugs gave with one hand they'd take away with another, but no, all the signs are that my general health is better after nearly 6 years of treatment than it has been for a very long time and I feel pretty good too, usually anyway!

  • Thank you, Postle, that's most helpful. Good to hear your health has improved and that your drug regimen is working well for you. The election: goodness, that's been compelling stuff!

  • I do agree overall with Postle, but it is very individual and I think where you are in your life makes a huge difference. If you've got to 66 before it's started to bite, then perhaps you do have time to explore options. Things can develop more slowly as we age as we don't have the buzzy metabolism of the less aged sufferers. My mother was diagnosed with breast cancer at 70, and her doctor told her not to fret too much as something else would probably get her before the breast cancer did. He was right, she finally died at 95 from completely unrelated things - and mainly just plain old age.

    Just don't leave it too long.....or rather don't ignore signs that it is getting active. Judging by the posts on here over last years, once it's really taken hold it can be more difficult to control. Once you've tapered off the steroids you will probably get a good idea of where you stand.

  • Thanks, for that. That was my plan, really - tail off the magic steroids, get my skin looked at, and see what happens. I'm asking the Rheumatolist to out me on the back burner just for a little while...

  • Hello Reikisally,

    Thank you for your story. I always appreciate posts where members give their individual story about symptoms and where they are comming from. I have been trying during the two years I've been member of the forum to understand the different faces of RA, the difficulties in making right diagnosis, the effect of the hard meds on our bodies, the benefits of dietary modifications and so on.

    I had a very similar beginning of my story. If I had known what I know today, when my symptoms started I believe I could have influenced the progression to RA. Skin problems after menopaus often a sign of estrogen-progesterone imbalance with estrogen dominance. I also believe that most of us RA sufferers have in fact had estrogen dominance way before RA, which has caused a low grade inflammation that has been a burden for our immune system and often after menopaus has caused hypothyroidism that has only added to the burden and resulted in often in adrenal fatigue and many deficiencies. All these malfunctions can easily be treated without toxic meds. Once RA breaks out your normal body functions are in other words in desperate need of help which you can offer even along sideif you decide to take meds. Dietary modifications, supplements, LDN can make a huge difference.😊Best of luck. Simba

  • Thank you, Sima.

  • Sorry, Simba!!

  • Not sure I agree with putting you at risk from other diseases from not treating it - maybe in a small number of cases but not the majority. . I think there is more at risk of joint deformities which cannot be reversed from not treating it. I have had periods of meds not working over the past 30 years and am definitely better with meds than without but still had a TKR at 49. Not the DMARD group of drugs for me as my body does not like them but does do better on the biologic group which I think are kinder on my body than DMARDs BUT we are all different. Farm

  • Thank you, I have appreciate your comments.

  • Hi and welcome to our merry band! 😎

    To med or not med that is the question! Well steroids long term are definitely not good. DMARDS have their clear risks and not treating also has its own risks... rock and hard place springs to mind but there are things that you can do. Turmeric is something to add to your diet in supplement, powder or raw form it can be added to salad dressings, soups, scrambled eggs etc. (Works best with black pepper). Ginger also helps and good prebiotics such as raw onion, raw garlic and raw dandelion leaves (not sprayed with garden weed killer!!!) will help with gut health as does probiotics - plain yoghurt and fermented foods such as sour dough or Kafir.

    VitD is a common deficiency as are the B vitamins (blood tests will let you know if you are deficient and I would get these done before buying expensive supplements). Magnesium can also be deficient in some.

    Get plenty of sleep if you can and 'eat the rainbow' in veg and fruits to get a good variety of antioxidants, vitamins and minerals.

    All the best

    Ali

    P.s. I am not med free and take 20mg of methotrexate a week... I teach full time and am doing reasonably well nearly 3 years post RA diagnosis.

  • Ali, thank you, and you can bet I'm researching all the dietary and supplemental stuff: there do seem to be quite conflicting opinions as to what constitutes an anti-inflammatory diet, so I'm feeling my way through. I had little or no Vitamin D in my body so was given 40,000 iu per week for 7 weeks and I now feel like a different woman! Now I'm taking 1000 iu per day to keep it up, plus turmeric and black pepper, fish oils, Vits C & E and Selenium. Apparently Methotrexate wasn't an option because although it can kill cancer in massive doses, it can apparently produce lymphomas in the smaller, RA doses. (Intesting paradox.) Hence starting on Sulfasalazine whith disastrous side effects, and Leflunamide being the next port of call.

    Sleeping is an issue for me, so thanks for reminding me, and for speaking about the rainbow diet. Go well yourself, Ali.

  • Have you ever thought about trying LDN? For me it did wonders for my sleep and pain.

    ldnresearchtrust.org

  • Reikisally, I too am fairly newly diagnosed, only a little bit younger than you, plus I do understand the difficult, soul searching & different perspectives you are considering. I too felt the same & basically " thought it wouldn't get me, I am not " full blown", a few aches & pains is not going to stop me gardening, decorating, dancing, travelling etc etc" so therefore I put my head firmly in the proverbial sand, ate healthily & got on with my life!

    After a month in Australia etc, the jetlag, ( I assumed this was jetlag) lasted 3 weeks, I told myself I had a bug, or flu, & I had excruciating pain everywhere. Oh oh, not so, I was in a massive flare which has literally damaged my hands & feet & now I feel completely useless oh & a burden to my husband who is trying to do everything for me. This rotten disease is now like a " galloping major" having gone " full blown & aggresive" so quickly! I now feel I have done myself irreparable harm & I only have myself to blame, when I could have addressed my condition, acknowledged the seriousness of it & could have gone on Methotrexate plus sulphalazine far, far sooner than just two weeks ago & therefore avoided the considerable damage & harm I have caused to my own body.

    Reikisally, I implore you to weigh up very carefully the way to go as only you can decide which is the best for you & the lesser of the two evils .......meanwhile wishing you all the very best in your RA journey xx hugs!

  • Gosh, that sounds so grim, and it must be awful to feel you made the wrong decision with such unfortunate results: I can understand your regret and I hear loud and clear your injunction to think carefully about delaying further treatment. It does need to be weighed carefully, and is a tough decision to make, tougher if there's an unhappy outcome such as you describe...

    I'd like to have the full picture before committing further: there are skin issues too, and once these have become clear then maybe all three departments can communicate about the best treatment options. At the moment, I'm being considered as someone with three disparate problems when there are clearly systemic connections. I feel it won't be long before the path ahead will become clear, and thank you for so passionately advocating the approach based on your personal experience.

    You guys are amazing!

  • I was diagnose with PsA 1 year ago after 9 years of symtoms and a very small patch of psoriasis. Have had sulfalasine, leflunomide which made no difference. Have 4 very swollen fingers and extreme fatigue. Give any treatment a go. If you are treated early enough it will stop the progress to the things I am experiencing. Trial and error with drugs but they can work in most cases

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