‘End of my Tether!!!!’

[ButterflySue]

Hi all, I’ll try to keep this as short as possible!...

I’ve tried many medications over the 25 years since my RA/D was diagnosed & returned to Leflunamide about 4 years ago, when I couldn’t get along with infusions or self injections. I wasn’t seeing any improvement with them. I’ve had the occasional steroid injection into my hand & ankle (where the worse inflammation occurs) or just in my bum, when it’s a ‘general flare. I’m also taking 3mg daily prednisone & Palexia painkillers.

However, 18months ago, after huge amount of stress going on with Family in the U.K. Leflunamide coulcn’t seem to cope anymore. After several weeks of waiting (Rheumatologist left suddenly & my notes were ‘lost’ at the hospital) I eventually saw a new (very dishy!) Rheumatologist.

Between us we decided to give BARICITINIB a go. I’ve always had a skin test for TB before starting infusions etc. but this time I had to have a blood test. The results showed POSITIVE for TB, but the ‘preventive medicine doc’ said not to worry as it wasn’t serious!! But because I wasn’t ‘normal’ & with my low immunity with RA/D, I’d got to take ‘CEMIDON’ tablets for 6months as a precautionary measure. Rheumatologist said that I would be able to star BARICITINIB after 3/4 weeks of taking the CEMIDON.

Unfortunately after2 weeks I started to get awful side effects, sickness & diarrhoea my back went into spasm (that’s another story!) So, I was taken into hospital & they said that I had an infection but not sure where! I had cat scan, blood tests, & MRI scans etc. & stopped all meds when I went in hospital. As soon as they got my temperature down & put me on painkiller & antibiotics drip, I was allowed to start taking my meds again. The next day I was sick etc & Hubby & I wondered if CEMIDON had anything to do with it. Sure enough I’d had a toxic reaction to them & they had infected my liver!! I had to stay in for 8 days (& even had 2 visits from my dishy Rheumatologist!!)

The next TB blood test came back negative, but you have still have to finish the course.

Rheumatologist then put me on RIFAMPICINA for 4 months....but last week I started to get same symptoms with sickness etc. & I’ve stopped taking them. I see him on Dec. 10th. So not sure what next step will be. Taking meds to help you feel better is one thing, I don’t particularly want to take them to feel worse, throwing up & on the loo for 4 months!!!😩

Meanwhile the stress level is increasing, worrying about Family in U.K. & not being physically well enough to go over there & ‘do my Mum job!!!’ Obviously this isn’t helping at all!!!!! 😥

Sorry about the lengthy post! But I was wondering if anybody else was in a similar situation (not Family stress!!) but with medications!!?! 🤔🙄

[Shalf]

Hello! And wow! Not just a long post but alot of info re drugs etc! I honestly don't know about many of these drugs. I was on Leflunomide and was very sick on that. If you hadn't mentioned liver problems I may have suggested having a glass of wine because it sure sounds like you deserve one or two! Then there's the dishy Rheumatologist! Not all bad then! Family issues can without a doubt excaserbate our health conditions. Stress ( I feel ) IS the number 1 for making things worse. No matter what is going on re personal problems it's important for you to focus on your health. No one is going to be any use to anyone with poor health. See to yourself first then tackle whatever issues lie in the UK. Wishing you all the best. Xx

[GranAmie in reply to Shalf]

you're back!! Good trip??

[Shalf in reply to GranAmie]

Well I didn't fall over too much Gran. Back on the donkey again.

[Shalf in reply to Shalf]

Or horse?? Can't remember! 😂 We Scots lassies don't stay down for long!!

[helixhelix]

Yes, look after yourself first. Won't be any use to your family if you are so run down.

I feel for you as I've just been through this before starting on Enbrel. But my rheumy decided that I should take both those drugs at the same time for a few months. Plus carry on with MTX, hydroxy & sulpha. And then start Enbrel after a few weeks. So there was a period of a few weeks where I was taking all 6 drugs. It was not nice! Especially not eating cheese or drinking any alcohol at all. I was lucky tho' and my liver held up even if my digestive system was totally buggered (and 5 months later my digestive system is still dodgy).

I just hope that you've taken them long enough to be allowed to move on to biologics. As for me those awful few months have been worth it as the biologic is working.

[GranAmie]

HOHUM.... i had a similar response to statins, my gp had put me on them when he told me my bloods revealed RA but that there was a 6month wait to see a rheumy. I asked why statins given my bp at age 72 was 140/70, my cholesterol was v good and i wasn't overweight. His reply? 'your age'!!. 30 days later barf barf, cdn't stand let alone walk. A&E kept me in, but no answers, said i cd go home in a day or two, the young medic asked 'anything else?'... i showed him elephant ankles, said i cdn't walk, he said 'any ideas?' , i said 'dunno but gp said i have RA but 6 month wait to see anyone'. Bless!! young medic got 1 nxt day, i got transferred , treated and home in 3 weeks. So here I am, off unnecessary statins, swimming mon-friday, not walking far but doing ok. 76 nxt week hello tenerife :} just w/chair in airports . Biosimilar helps plus a dose of pollyanna....

[Shalf in reply to GranAmie]

Fantastic Gran! Seems like you got lucky with a dishy doc too! Enjoy Tenerife! X

[Hattie23]

Thats a very sorry tale. You're a marvel. Im pretty positive a dreadful dreadful year of stress mainly familial was the trigger for my ra as i was fit and vrry well but it was in mt family. Please pleade vet yourself well FIRST. whatever problems are they need to care about you too. Rest up.

Xx

[jojo_71]

Hi hun. Bless you. Being ill like that on top of your other illness is no fun. I haven't got exactly same experience, but over my 30 +Yrs I've had a few reactions to some of my meds. Is this new drug an antibiotic type drug? That would reck your insides.. Hence maybe you get ill after so long on them.. Do you take probiotics? They would help put the good bacteria inside.. They definitely help me cope with the methotrexate I'm on.. I've heard blue cheese also good.. Anything fermented basically will help your insides cope. Hope you feel better soon. Xx