Hospital Rheumatology appointment this Friday

I phoned to ask if this was still on and was surprised to discover that it was. As it’s been over a year since my last appointment (due to Corvid19) I wondered if any of you guys have any treatment changes, or advices, I’m still on a 15 mg methotrexate pen injection once a week, followed by a folic acid tablet two days later. I don’t feel any different, have lost 2 lbs in weight, my shoulder still locks, suffer severe calf cramps in bed, and have problems getting to my feet from low position, I take a 5 miles dog walk every morning and am an avid gardener, are they just going through the motions or can they do something positive?

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    What you are receiving at the moment is pretty standard treatment, I confess I forget how long you have been diagnosed and on meth but the problems you are having sound pretty normal to me: possibly increasing magnesium or potassium in your diet might help ease the cramp, your shoulder might benefit from doing some straightforward physio exercises on alternate days for a few weeks then, if there is an improvement, maintaining that by doing them every three days. I envy you the ability to walk the dog for so far but not the gardening, I agree with Joan Bakewell's opinion on that. I began on sulph, then meth, then both, then sulph and leflunomide, sulph and cyclosporine (all tablets) but none of these reduced my CRP or ESR. That wasted a good few years until I qualified for biologics. Things are different now, you never know the rheumatologist might suggest introducing another med. How would you feel about that? What are your expecttions of the medications? DD

  • Crookesey
    Crookesey Bots Posts: 119

    Your last comment/question is very interesting, as I will be aged 73, if I manage to make it to the end of this month. I fully appreciate that movement of limbs depreciates with age, however I just wondered if the aim of rheumatology is to stabilise rather than improve mobility. If my local rheumatology dept asked me to try some new medication I would be delighted to assist, however I expect today’s visit to be a mirror of my last visit, I am not a pessimist by nature, please prove me wrong NHS.

  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    I remember when I began humira (a fortnightly injection) my mobility would noticeably improve for around twelve days after the injection but that was years ago: my rheumatologist also told me I would be able to ditch the crutches and pain relief. I think she genuinely meant it because that had happened for others but in my case she fibbed. Now there is no difference in mobility but my bloods remain good with little sign of disease activity: this means the meds are working despite my feeling no physical benefit and that has to be enough. I am now enjoying my 24th year of arthritic depredations, I began aged 37.

    I shall be thinking of you today, please let us know how you get on. DD

  • Crookesey
    Crookesey Bots Posts: 119

    As expected, high BP no change in medication, what’s the point?

  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    The high BP could be a side effect of the medication, I know mine rose when I began humira so I now take meds for that.

    The point of the medication is to stop disease activity thus reducing the potential for joint damage and deformities (and in the case of RA damage to other body tissues such as the lungs). I don't know if you have seen pictures of the damage caused by untreated RA, they are not pleasant and now avoidable thanks to the discovery of DMARDs.

    You are under no obligation to follow the course of treatment but DMARDs and NSAIDs and pain relief is all there is, the rest is down to us with exercise amd eating well to maintain overall body health. I am diseased but not ill, it's a conundrum. Rheumatology is not an exciting, glamourous or interesting branch of medicine; with no cure on the horizon I could agree what is the point but my take is the meds help me to make the most of my inferior physical resources. Hopefully they will help you maintain your superior ones. DD

  • Crookesey
    Crookesey Bots Posts: 119

    I am minded to smack myself on the head with something solid, your final comment makes me feel very selfish, which wasn’t my intention. I’ve never played a game that is not winnable, which led me to my ‘what is the point?’comment. I did offer my body for the experimentation of trial medications, however it went down life a pork pie in a synagogue, such is life.

  • Elmbow
    Elmbow Member Posts: 80

    I don't know how a branch of medicine that deals with diseases affecting virtually every system of the human body, where nearly every patient presents as a puzzle needing to be solved using a vast array of tests and scans and clinical judgement, and employs some of the most rapidly evolving treatments in the entire field of medical advancement, could be thought of as not exciting or interesting. I think rheumatologists would disagree. Glamorous? Maybe not, but which branch of medicine is?

  • Crookesey
    Crookesey Bots Posts: 119

    Now let us see, maybe private practice plastic surgery and weight reduction to the rich and famous. The work would be similar to other branches of medicine, however spending the money would be both exciting and interesting. ♥️ £££