Hi

delid
delid Member Posts: 3
edited 14. May 2019, 06:30 in Say hello
Hello everyone, I am new here and is so good to learn your experience. Following surgery last year, everything went out of control and after- I've been diagnosed with osteoarthritis. It took months to picture which medical area is covering this problem and to get to rheumatology. Finding the reason wasn`t the end of my problems. The joints, fingers, wrists, ankles, knees, spine, hips are crackling, inflamed, painful, burning, stabbing, stiff, Baker`s cyst behind knees, low sleep, high pain and tension, heels, dry eyes, headache. For months I had a hand trigger, hardly brushing my teeth or hair, however, after a steroid injection, my hand was better; now another trigger is coming around. I wonder if the injections are working for hips, knees and so on. My stomach is not happy with the pills (following treatment for kidneys years ago), I couldn`t handle Hydroxychloroquine, but the Prednisone worked well taken in need. At the last appointment, it has been recommended injectable treatment Methotrexate and I have asked time until August to find more about (and to try other treatments, unfortunately these are not cheap). Understanding that the patients are reacting different to treatment I have tried some (which I do not recommend): DMSO, Borax, Colostrum, Celadrin capsules, MSM, Prednisone, Collagen Hydrolyzed, colloidal silver, Hyaluronic Acid, Glucosamine, Garlic oil, shark cartilage, biotin, Aspirin, Naproxen, Indometacin, Piroxicam, bicarbonate, antibiotics, Paracetamol, Codeine, Co-codamol, tinctures, turmeric, cider vinegar, vitamins, calcium, clay, voltarol, ibuprofen capsules/gel, pain gone pen, magnetic pressure, two chiropractor meetings to check if the hands and legs numbness is connected to the spine, just few meetings acupuncture and osteopathy as much as I could afford, mindfulness, and so so so...
I just give a few examples of what I get so far and this is not recommended. Weird, the antibiotics, garlic oil, vitamins, colostrum, turmeric, diet, (no sugar, less bread, dairy, etc), helped me to control the flares up. I`ve tried to attach pictures of my knees and fingers but is not working. Two- three years ago I was jogging, now I bought a walking stick (trying, in seconds, I realized that the wrists/fingers are not helping). Is difficult to coordinate my walk more then 20-30 minutes continuous, weak fingers, pains, I am worried about my condition in the past year. The cold is not helping at all, this is why the last year, after four days working in cold environment (at least for me), I left my job. I have been active, looking to study, to work, now I try to find a way to handle the future. And I study about osteoarthritis/rheumatism - is not this my passion, just a pain stimulant, trying to manage this rubbish headache… Just kidding, it would be too easy to solve just with an Aspir in… Possible to have a second surgery and it is not easy but I carry the daily duties, volunteering when I can and to stay active, even if the next day is more painful, like a payback… Acceptable days, bad days but I hope to make these good and stable.... In the meantime still looking for support in finding a way to cope, to provide for myself, a job.
Thank you for sharing your experience,
Delid

Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Welcome to the Versus Arthritis Online Community, Dilad , from the moderation team.

    I am sorry to hear of your diagnosis of Rheumatoid Arthritis (?) I am assuming this is what the Rheumatologist is treating you for as you’ve tried Hydroxychloroquine and are being advised to try Methotrexate (MTX for short).

    Steroids have helped and steroid injections have helped with your trigger finger(s?). You have tried a chiropractor to check whether the trigger finger(s) are due to spinal issues. I am sorry physical and outdoor work has proved too much for you.

    If I understand you correctly you are asking for people’s opinions on many different products sold to supposedly help with Arthritis.

    This might help a bit while you are waiting for members of the community to come along with their own experience:

    https://www.versusarthritis.org/about-arthritis/complementary-and-alternative-treatments/


    This link leads you to information about diagnosis of Rheumatoid Arthritis Apologies if you already know some/all of this:
    https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/


    If you think it might help do please give our helpline a call on 0808 520 0520

    I look forward to seeing you posting on the boards.

    Best wishes


    Ellen
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us.


    I have both an auto-immune arthritis and osteoarthritis. Auto-immune inflammatory arthritis cannot be helped, improved or stopped by the things you listed, they are for osteoarthritis and, to my way of thinking, are very effective placebo treatments (been there, done that, got worse regardless). In the case of rheumatoid, psoriatic, AS and all the other kinds of inflammatory arthritis the cause is an over active immune system which leads the body to attack itself. To reduce the joint damage which results the immune system has to be suppressed by drugs such as sulphasalazine, methotrexate, leflunomide etc. The inflammation affects the whole body whereas OA inflammation is localised. Steroids are effective but they work by thinning ALL body tissues, they do not target the naughty ones. They think the skin, the muscles, the bones, all the organs so they are not ideal.

    In an ideal world we would not need the medications that we do but, believe you me, an untreated auto-immune arthritis is far worse than dealing with the meds. If you want proof then Google pictures of people with RA who were unfortunate to be diagnosed before the meds came along.

    There seems to be an unspoken general assumption by those who are new to this that people like me who take the meds are idiots for not pursuing the 'natural' route. The disease is a natural thing but its treatment is another matter altogether. Any form of arthritis is degenerative and progressive, I began 23 years ago with one affected joint, now it's around forty and I have both kinds despite 18 years of treatment. I am positive that without the meds I would now be in a wheelchair (I have one but haven't used it for years) but I've persevered with them and disease progression has definitely been slowed. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    Hello Delid and welcome from me too.

    I'm glad you found us. Arthritis of any kind is a difficult, painful and very frustrating disease and it can be very helpful, especially when things are bad, to share and compare stories with others.

    I think it might help you if you read up a bit on the different types of arthritis. https://www.versusarthritis.org/about-arthritis/conditions/ Perhaps, at first, you were thought to have osteoarthritis but the fact that you are seeing a rheumatologist, and have been prescribed methotrexate and hydroxychloroquine, suggests that you actually have rheumatoid arthritis. Unfortunately it is possible to have both. I got OA (osteo) because my RA (rheumatoid) wasn't dealt with by use of the proper medication, such as methotrexate, in the early days.

    You seem to have tried a bewildering array of medicines and supplements. I'm sure some must have been prescribed but, if you have kidney and / or stomach problems, it is a really bad idea to take any over-the-counter medicines or supplements without checking first with the pharmacist that they will not interact with anything you're already taking. NSAIDS (Non-Steroidal Anti-Inflammatory Drugs) such as ibuprofen, naproxen and indomethacin are notoriously bad for the stomach and aspirin can be dangerous for some people. Prednisolone ( a steroid) can work wonders temporarily but is not a long term solution for us because, taken long term, it will cause damage elsewhere.

    In view of all that you have taken, I don't really understand your reluctance to have methotrexate injections. These might well work, unlike the others, as they are a proper DMARD (Disease Modifying Anti-Rheumatic Drug). Hydroxychloroquine, which you say you have taken, is also a DMARD also but a mild one so it's not usually given on its own. I take it along with methotrexate and they work well for me.

    There is, unfortunately, no cure for RA. It is something we have to live with. And, though the DMARDS will hold back the disease and stop the worst joint deformities, they don't always have much impact on the pain. Sometimes people think the presence of pain means that the medication isn't working. That's not so. The regular blood tests will determine whether or not they are working to keep the disease in check. Pain is a separate issue and often results from damage already done and irreversible. We can't usually banish it. We have to find a level that is tolerable, using so-called 'painkillers' when necessary but also exercise and other techniques. It isn't easy but, in time, we learn to adapt.

    I've had 58 years of adapting to it. I'd strongly recommend that you forget all about the supplements and get on to the methotrexate as soon as possible. As for brushing teeth – I'd have none left if the electric toothbrush hadn't been invented. It enables me to do a good job despite very limited flexibility in my hands. Lots of other aids are available both online and elsewhere. Just google 'disability aids'.

    If you have any questions it's best to put them on the 'Living with Arthritis' forum as more people will see them there.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran