Biologics

sonlk
sonlk Member Posts: 1
edited 25. Aug 2025, 12:41 in Living with arthritis

Hi all,

first time poster, I suppose looking for some resources really.

I am a paramedic, during covid like everyone I contracted the dreaded lurgey. I wasn’t unwell with covid just tired. 3 weeks later I began to get pain in all my lower legs and joints. Ankles knees hips. To the point where it was excruciating.(2021)

I saw a rheumatologist who started me on oral Prednisolone. Which helped so much and then moved me on to benapali injections twice weekly. I’ve been using same for about a year to good effect, unfortunately my pharmacy (and others) are experiencing a shortage on the medication and sometimes I am left waiting a day or two for the medication to come in to stock. I am very very hesitant to use Prednisolone again, I put on 25kg!! I try keep myself fit and I was so unhappy and down when I put on weight.

The rheumatologist suggest that I had a form of reactive arthritis from Covid that is still present, I don’t have “markers” for rheumatoid but he is 50/50 on a true diagnosis. I’d like to add the rheumatologist is nothing short of a legend, always on the other end of the phone if needed. Paper work, repeat scripts, etc nothing is a hassle to him.

I just can’t cope with the tiredness anymore. I exercise 3-4 nights a week and I am floored after it for days of my injections are in anyway late.

I find I sleep 24+!! When I wake up I’m anxious, and extremely sore. Ankles particularly.

Just looking to see if anyone experiences the same and what you use to combat the tiredness. I work a lot also, so down time is precious and the last thing I want is to be stuck in bed.

Can ye reccomend (peer reviewed, or a source) of diet, supplements, etc that combats same?

Tagged:

Comments

  • annabanana
    annabanana Moderator Posts: 176

    hi @sonlk gbank you for sharing your experience and welcome to the online community! It’s amazing to hear that you have such a reassuring rheumatologist. I’m sorry that you’re experiencing such issues with fatigue/tiredness, this experience is more shared than you think - using the chat function you should be able to find what has worked with similar issues. I have also attached a wee link on managing fatigue.

    https://versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Jane18
    Jane18 Member Posts: 107

    @sonlk, have you had a blood test recently to check your vitamin levels? I had Covid at the beginning of last year and felt constantly tired for a long time after that. I put it down to longer term effects of the virus, plus the fatigue one can get from arthritis, but went to see my GP to see if there was any other cause. They found I had low levels of Vitamin D so recommended supplements. It has helped, as I no longer feel the really debilitating tiredness I used to experience. I also used to have B12 deficiency from being on a vegan diet, which also impacted on my energy levels, so now take supplements for that. It may be nothing to do with that, but worth checking out if you haven't already.

    Take care,

    Jane

  • Arthuritis
    Arthuritis Member Posts: 591

    @sonlk I have posted exactly what you have asked for on a number of occasions, so if you search under Prof Claudia Mauri (UCL) or Katsumoto (Harvard) you should find some promising actionable results, as together with the research findings I also posted dietary changes. As a paramedic I would assume you have already checked your vitamin levels to ensure they are acceptable. However at this stage what’s going to have the most profound impact is a substantial change in your diet and some lifestyle changes. I have been through the heinous pain, having to wrap my knees in special frozen gel (-24C), to get some relief to where I am now, having spent 2 years off drugs and off symptoms, then relapsed when I accidentally ate a flare up trigger.

    Surprisingly it’s often the usual intolerance & allergy suspects: A1 Casein, Soya & soya lecithins, nuts, lectins especially from beans & egg white. These are usually listed as allergens on factory product labels, but not always, even if the item does contain it, but below threshold for most but not RA & allergy sufferers. Sometimes they use weasel words like “May contain Soya, milk, egg …”.

    It’s worse in the morning because your brain turns on your immune system for house keeping to maximum during rem sleep, sadly that’s what also causes your joints to get attacked by misguided T-effector cells as the tolerance and regulatory effects of T-Regs seems to be low in autoimmune. It is also why melatonin will cause flares in addition to that deep sleep.

    So what can you do? As a paramedic I’d suggest reading up on the links I posted (If you can’t find them come back and I will try and dig them up). The links will give you an idea on how to plan and test your self help. BTW I used to be on the max UK allowed dose of MTX, which suppressed my immune so much I’d regularly get bacterial infections and even shingles (ouch!).

    Got off all that, and I am sero+, with numbers off the charts on both NHS & Private tests.

    I even had a CT Pet scan last november and not a trace of RA, despite no meds! But the bloods were still +ve for RA (so i have the antibodies and can flare if the trigger is ingested).

    Talk soon!

Categories