Endless battle to find meds I can cope with

[Manclady61]

Hi my lupy friends, I have SLE ITP sjorgens Raynards fibromyalgia and neuropathy, greedy I know 😊 since the beginning of the year I have been fighting a massive flare and being ignored really, then I decided to help my rheumy with some research to make gps more aware that when we say we have joint pain we’re not imaging it, and if they would only send us for a scan they would see the massive amounts of fluid we have between our muscles and in our joints, as I have and now at last they listened, my problem is I have tried every medication thrown at me but every time my body rejects them or they don’t work☹️☹️, I have a constant battle with a low platelet count this week being 12, surviving just on ivig infusions every 4 to 6 weeks, going to try methotrexate in 4 weeks when and if my platelets come back up, I have tried everything, I’m exhausted and worried what’s going to happen next as my rheumy says we’re running out of options now, has anyone else gone through or going through the same thing, sorry for the long post be happy and healthy people x

[Hidden]

Sorry you’re going through this. I do agree that GPs aren’t very switched on where it comes to knowing when arthritis is inflammatory or osteoarthritis or chronic pain/ Fibro.

I’ve never had ultrasound or MRI looking for inflammation when I’m in pain. I know it’s there because my inflammatory markers are high - but unless it’s visibly hot and swollen in our finger or knee joints they assume that the elevated blood and larger joints are unrelated. At least they do with me. And I keep asking but they say the evidence doesn’t support this due to one CT I had 2 years ago showing lumbar degeneration from osteoarthritis.

I’ve tried 5 disease modifying drugs now. Four of them including Methotrexate and Hydroxy, I’ve failed to tolerate and my rheum took me off Mycophenolate in case it was causing tremors or other abdominal problems. It wasn’t but now they won’t allow me to try anymore drugs so my inflammation levels are up and pain is back but in a new area for me.

So I’ve just taken a naproxen and will keep taking it for the coming weekend and then my tummy will play up so I’ll have to stop - but hopefully, by then I’ll have knocked it on the head. I have no answers as most of my problems are blamed on ageing (I’m 55) or Sjögren’s one way or another. I know I have Sjögren’s and was initially diagnosed with RA. I’m convinced the pelvic pain is inflammation related but I can’t prove it of course and they just blame wear and tear or whatever. It’s most frustrating! In my case I think the pain is due to some kind of spondyloarthritis but as I don’t have Psoriasis this hasn’t occurred to them. It only occurs to me because my cousin has PsA without the Psoriasis and has described her own pelvic and knee pain to me.

[suzannah16 in reply to Hidden]

I had ultra sound on my ankles [I was told it was going to be on my hands] was really painful as they press so hard. they were using me as a guinea pig to test a new piece of equipment and the only bit I understood was that there was arthritic damage to my ankles. have never been told anything about it no test results nothing. I get so confused whenever I see consultants with all their medical words that my brain switches off.

[Manclady61 in reply to Hidden]

Thank you for your reply we seem very similar in our search for a medication that we can tolerate that doesn’t make us ill, I must admit I am a little worried about trying methotrexate after the some times horrendous side effects I have encounted In the past, with mycophenolate, cyclosporine and some I can’t remember the names of, rituximab and azthioprine didn’t work at all, I take hydroxychloroquine already but it’s not enough to keep my lupus at bay or keep my platelets up at a reasonable level, we just need to keep going and pray that some day we find one that works for us, I’m hoping when the paper is published it might make gps listen a bit more and have a new understanding of this cruel disease, and hopefully help others like us, I hope you ding some peace, be happy and healthy x

[Melba1 in reply to Manclady61]

Hi, sorry you’re in such pain 🙁 I’m like you in that I’ve failed to tolerate many meds. Mycophenalate nearly killed me, azathioprine did something to my heart, I ended up in hospital with blackouts and very rapid heart rate after rituximab so was told that options were running out for me too and because I tolerate steroids so well and don’t get any of the bad side effects I should stay on steroids forever.

My rheumy recently put me in methotrexate although I found out in a letter he’d written to another rheumy that he thought I would react badly but I haven’t. I’ve only had one dose and I’ve got the injection version (which is a bit scary but painless and easy) but I didn’t even feel sick (and I’m easily sick 🤢😂). I have got terrible itching but that’s it. I feel very positive that this might be the one got me!

Worth trying it if they suggest it maybe but think the injection stops many of the side effects so maybe worth requesting that?

Yes I agree, most drs just cannot see it understand our suffering. Raising awareness is all we can do!

X

[Manclady61 in reply to Melba1]

Hi thank you so much for your reply😊 it’s nice to know it’s not just me who doesn’t tolerate the various medications they throw at us, I sorry your reaction to them has been so severe, the plan is now for me to start on methotrexate in the injection form so like you hopefully it will reduce the chance of me having side effects, but I can’t start until my platelets are up to a reasonable level so the rheumy is seeing me again in 4/6 weeks 🤞🏻, I hope you continue to be ok and that methotrexate is the one for you and you have a massive improvement, be healthy and happy x

[Imom]

Hi there. You are not alone or greedy. I share some of your ailments: SLE, connective tissue disease, Shogruns and Reynauds. I take Placquenil and it has helped. A lady I met with lupus shared an enzyme she took that helped her and i started taking it. It’s called Serrapeptase and it fights inflammation throughout the body. I seemed to give me some of my energy back. I still have pain and small flares but at least I’m not a couch potatoe all the time!! Look it up on the internet. There’s also utubes on it. It’s completely harmless with no side effects and believe me, i am not able to take most drugs as I get every side effect. I hope you find this. Useful and worth a try. Wishing your pain away! Hugs!

[Manclady61 in reply to Imom]

Thanks for the message😊 I will certainly look into Serrepeptase, I’m glad you have some relief from the endless fatigue x

[Treetop33]

I tolerate meds quite well but I'm not on the really strong stuff yet. The problem is more they haven't really helped much. In the meantime I'm trying low dose naltrexone, which I got from private prescription. I'm not going to say anything as to it's efficacy because it doesn't work for everyone (and it's still early days for me), but if you want to find out more there's a Facebook group: facebook.com/search/top/?q=....

[alice_sportyauthor]

Hi

I had ITP first, Lupus second.

They spent about 2nhalf years trying to ‘fix’ me before I told them to leave me alone.

One of the haematologist was great, and he agreed that whilst my blood was in my blood stream a low platelet count was not the end of the world (plus the meds didn’t have any effect) I spent about ten years unmedicated on a platlet count of between 7 and about 25. I’m still here with very few ‘incidents’ in that time.

Now I have Lupus too.

They started with hydroxclroquine, that cleared my brain fog but little else, so they put me on mycophenalte. It’s horrible and made me very seasick and nauseas feeling. But I stuck with it. I now take less than the recommended dose - in agreement with rheumy consultant -but have a lot less Lupus issues and a slightly higher platlet count. Took us about six months to decide the ‘normal’ dose was too much and about another six to settle on the right amount.

Good Luck

Keep talking to the Drs even if you think they aren’t listening, don’t let them have it all their own way ! 😉 and good luck.