Advice/Help/Sympathy/Empathy/Solidarity needed..

[Tonkie]

This will be a long post, I’m sorry. I’m struggling with all of this.

I’m on Methotrexate 20mg injections and Hydroxychloroquine. The injections were great at first for the nausea, but slowly it crept back the more I took. The fatigue has always been an issue - after I inject I am floored for days. Both of these meds controlled my morning stiffness, my joints felt the best they’ve been in years, my skin wasn’t hanging off, my face wasn’t blowing up and my allergic reactions were almost non existent. Awesome right?

October came around and we were going to Disneyland. I have 3 children, two with disabilities. My son had recently been diagnosed with Epilepsy and it was a hard trip. I decided to skip my medication for the week so I wasn’t fatigued or feeling sick while I met Mickey. Was the best decision, we had a great time and I had more energy to devote to my son who was struggling with his new medications.

when we got back, my son was hospitalised with his epilepsy for 10 days. I had to run the house and do all of the school runs which is too exhausting for me on the injections., so obviously I decided to skip another week and another.. but look! No negative effects. My skin is fine, my joints feel ok. Maybe I don’t need this medication after all? (My first rheumatologist has filled me with doubt over my having these diseases, so it’s always there at the back of my mind am I taking them for nothing?)

December came and wow. It hit me like a ton of bricks. The stiffness came back, my skin started peeling off my hands and feet. My psoriasis came back on my scalp and ears. My hands started swelling.. the whole shebang.

I called the nurses, admitted how stupid I’d been .. they understood and told me to start taking it again. They said when I was established and symptoms were under control they would change me to another medication - yes!!!

I took one injection that floored me. Got two infections, one in my chest and one in my sinuses. Long story short, I’ve managed to take 3 injections since December only. I’ve had repeated infections in chest, sinuses and boob???? And I’ve had 7 rounds of antibiotics now. I can’t get back on to these medications. I look diseased. The skin has all peeled off my hands and feet. My joints are terrible and swollen (I’ve been given steroids but I can’t take them all the time they make me feel so rubbish mentally and jittery)

I had bloods this week and my white cells are ridiculous and I know it’s another round of antibiotics on Monday. I can only take two different ones as I’ve had allergic reactions to everything else. I hate myself for messing things up. The only good thing is it’s shown me that my first rheumatologist was very wrong and has taken those doubts away.

But now I’m trapped in this never ending cycle. I’m ill all the time. I have temperatures daily. I’ve missed out on all the fun stuff, birthdays Xmas etc. I can hardly move in the morning. I’ve had weird rashes I’ve never had before on arms and legs - they’ve got rings around them. Google told me it was ringworm!! But I think it’s more autoimmune.. when they flare up I’m dead on my feet. Mouth full of ulcers. I just feel absolutely terrible. I’ve got to wait until 5th march to see my rheumatologist and admit what I’ve done.

This is getting very tedious and monotonous now. And I guess I just wanted to speak to people who ‘get it’. I feel like such a liability to the family. Throughout all of this I’ve never been able to fully stop though.. I have to do all the admin etc. but I’m always the one bailing on plans or the mum who doesn’t help out at school. The kids keep bringing back colds and I can’t get rid of these infections I don’t know what to do anymore.

[Cathyan]

I’m so sorry, Tonkie. You have so much on your plate and it’s understandable how this has happened with this horrible disease. I’m sure lots of us can relate on here. With kids and their needs we’ve all suppressed our own and done anything we can think of to get through on a day to day level. Can you step back and get more support and a chance to rest?

I wonder if one problem is that you’ve been going straight back to 20mg methotrexate after a long break each time instead of titrating up again. Might your rheumatologist offer some lower doses to try?

[Tonkie in reply to Cathyan]

Thanks Cathy, you’ve made me feel a bit better knowing I’m not alone. This is so hard having 4 people rely on me constantly when I feel so sick all the time. I originally called the Rheumy nurses in December to ask whether I should carry on with 20mg or if I needed something lower and build up again. She said crack on with the 20mg…

It’s only just occurred to me this could be the reason!! Maybe I would benefit from going slower. Thankyou for the idea, I don’t have my Rheumatologist until the 5th but I suspect she may say the same thing. I’m gutted I got to the point I didn’t need all those blood tests, my health was pretty much under control. The first time in my life I could use skin care and make up and be like a ‘real girl’ 🤣 and I’ve blown it.

I have however wanted to change from Methotrexate just because the side effects are so debilitating. I’m not sure what she will do at my appointment but it is definitely worth mentioning I need to build up. That could be where I’ve gone wrong this time.

Thanks again for your reply.

[Cathyan in reply to Tonkie]

I hope you can get some support for the next week until your rheumatology appointment. Can you get some childcare or other practical support so you can rest? Is it worth ringing the rheumatology nurses for advice in the meantime? Such as about Prednisolone? Hope it gets under control soon. There are definitely other drugs out there to try. For me, methotrexate works best on keeping the fatigue at bay and getting my prednisolone dosage down and I put up with one day a week of feeling nauseous. Other people swear by Mycophenolate (which didn’t work as well for me). I also have psoriasis so the methotrexate helps that as well. Sending hugs.