Can I just be 25?

[Mishycake]

Hello all, I’m new to the community!

Ive been diagnosed with MTCD+polymyositis+dermatomyositis since I was 20 years old and many flare ups and hair loss later, I’m 25 now. I’ve been on prednisone, hydroxychloriquine and azathioprine for my joint and muscle pains and to keep my immune suppressed. I guess our own body is attacking itself?

Anyway I’ve had terrible doctors throughout my journey so far and today I’m going to see a new rheumatologist. A little bit of history: I was able to finally taper myself off of all of my medication successfully in June of 2018 without any problems. Then December of 2018 I got hit with pneumonia (again) and it seems that my body went into a flare up as I was again having fevers, cough, severe knee pain, weakness, fatigue etc- just like before. The pneumonia took two months to go away after lots of antibiotics. So now I’m back on prednisone (20mg-even though they wanted to put me on 40) which has helped stop my cough and fevers but I wake up with extreme pain every morning from my throat to my back. Then once I do take the prednisone with breakfast and it takes a few hours but it all slowly goes away. I am hopeful that my new rheumy will put me on some sort of plan to taper down because I know how prednisone+ the other meds have done me very dirty in the past (hair loss, lost all my plumpness in my face and basically all my 20 year old-ness was snatched) so I’m just afraid to be on it for too long again. I had a great 6 months there of not being on meds and a lot of my youthfulness was restored and I felt like I was on track to a normal 25 year olds life again without having to deal with so many side effects of the meds.

Also I know this is a long post and kind of all over the place but so is our disease, so thank you for reading.

ps you guys are awesome and so strong.

[Lisalou19]

Wow what a mixture of autoimmunity you have. I’d been interested in hearing how dermamyositis has affected your skin?

I recently met a lady who has polymyositis, she has to take a daily 5mg dosage of steroid , this is a long term plan for her along with other medications.

You are very young to be going through all of this , I hope you have a good family support network

Xx

[Mishycake in reply to Lisalou19]

Hey there!

The dermatomyositis has affected me mostly around my eyes, also when it’s very cold you can see a lot of redness build up on my knuckles. Around my eyes what you see is the veins on my lids as well as a purplish red tinge all around as if I just came out of a freezer after 10 years. There are also little bumps on the lids as well as underneath. When my prednisone is working for me, these issues become more tame.

Indeed my family has supported me a lot throughout this journey and I continue to learn from my own body day by day. That’s all we can do is adjust and maintain- with fingers crossed for no flare ups

[Peppytea]

Oh Mishycake, you poor dear. You seem to be having a real time of it! Hugs and positive vibes going your way and you’ll be in my prayers.

I’m 28 myself so not far off of you. Over the Christmas holidays I had a sinus infection and a chest infection a few weeks later and since then I haven’t been able to get myself back up onto my feet. I have fibro, hypothyroidism and hypermobility, but I’m being tested for Lupus and/or Rheumatism. I have been getting depressed lately because I too feel like my youth has been and is being snatched away because I’m not well. I just think it takes time for any of us to learn that whatever may be, it’s important to look after our health first and foremost. I hate going on prednisone for my chest and I refused it after an asthma attack once. I was still getting chest pain 3 weeks later, it was awful. I learnt from that mistake that although I may not want to take it, my body NEEDS it. And that is greater.

I really do hope you begin to feel better soon dear, please let us know how you get on. If you feel you would like to chat privately about anything, please feel free to message me! Take care lovely 💖🌟

[Mishycake in reply to Peppytea]

Hi Peppytea!

Reading your post gives me such a sense calm so thank you so much for responding. I’m so sorry you’re also having to go through these menacing obstacles at such a young age. We just don’t need this!!!! But yes absolutely I’ve had to bring myself to terms about getting back on prednisone despite hating it. My flare up happened exactly on Christmas time as well!! Doc said it was either pneumonia or a bad viral that was stubborn. So after that went away, I was placed on 20 mg of pred (around March 1st) and since then I would wake up with new pains and aches which kept getting worse these past few weeks. All the way from my jaw to my back, extreme pain. It felt like I was being strangled all night. Couldn’t swallow in the morning, just awful. So this past weekend I told my new rhemuatologist about this and how it’s getting worse and worse so he told me to jump down to 15 because maybe 20 mgs is just too much on my body. (Which is interesting because in the hospital they wanted to start me on 40-and I refused).

Sooooo me being me, I jumped down to 10mgs 😬. Been taking 2 tabs of 5 milligrams in the morning for the past three days and all that pain I was having now feels like it got cut down by 75%.

It’s like we’re playing a game of chicken with our body honestly. I know for a long time I struggled to even understand that MTCD is separate from polymiositis, then struggled to understand the difference between undifferentiated and MTCD. And for a long time I just called it a mystery illness because that was my way of coping with the fact that I just felt horrible all the time.

It’s a lot. Then on top of that finding good doctors is a struggle of it’s own. I feel your pain sister gurl!

[AndrewT]

Dear Mishycake,

First of all I'm sorry, to hear, that you have been/ are so unwell- my Prayers are with you Sweetheart. Secondly...Wow that's some Mixture Of Illnesses! I'm impressed that you managed to 'Taper', indeed 'Come Off', Prednisolone even for a short time- NOT something I could ever do. Not that I actually have Lupus- yes I'm a 'Fraud', interloping on Other Pages.....(I actually have Vasculitis, a Systemic Vascular Condition, that attacked my Brain, Heart and Kidneys. I had a Kidney transplant, in July 2013, after Four years on dialysis.) However your 'Post' caught my eye.

Yes you ARE, quite young, to be Going Through, ALL of this, but with Youth comes Strength. I'm sure that you are Still a Lovely Girl, probably with Soft hair (unless you are a Boy, in which case, erm sorry!)

Please DO, feel free, to contact us again Mishycake (great 'Name' by the way). I know that we all send you, our Love, and best wishes.

AndrewT