NIchole,
Fatigue is a big challenge for me to, especially on an immunosuppressant of any kind, it's like you can never get over the hump! Hope this will improve for you!
Hi!
I haven't tried Rituxan but I think that Nichole has has success with it. I currently take Methotrexate. I have tried Azathioprine and Plaquinel, but the side effects were a little much for me.
:-)
SK said:
Hi Maren,
A Derm diagnosed you, in many cases of autoimmune, seems as though the Derm is the one who finally solved the mystery! Thank God for her!
I'm sure the tests are exhausting, and the biopsies are terrifying, but gotta do them, right? I can imagine how much of an emotional struggle this is for the young. I feel everyone deserves to have a healthy childhood and young life, we expect for things to go wrong when we age. And please don't misunderstand me, I have great compassion for all, and don't feel okay about someone who is not young being ill, especially chronically ill.
Is Rituxan something that is working for you?
How are you tolerating the MX, Maren? And is it helping?
Hi!
I am almost afraid to speak - so I'll be knocking on wood the whole time! MTX has helped me greatly, but in the past few months my weakness has been coming back in my upper arms and thighs. I have an appointment in a couple of weeks, and I think that a new MRI or biopsy will be in the cards for me.
When I started with the drug, I took the pill form, but would get incredibly ill after taking the weekly dosage. I then switch to the shot, but I developed anxiety about giving myself the injection - probably because I was in such a low place that I associated the shot as something horrible and then let it ruin my whole day. So, I switched back to the pills, and split the dose in half at 12 hours apart.
About 4 months ago, my skin symptoms returned and so I went back on the injection in hopes that maybe the medication would be better absorbed into my system. Everything was going fine until last night when I had the weirdest experience... I'm feeling a little superstitious! 1. My first needle was broken and leaking medication, so I had to grab a new one 2. My little rubbing alcohol pad was all dried out, so grabbed a new one. 3. The shot burned like a mo-fo when I first put it in my skin, so I took it out. 4. The next spot hurt, but not as bad, but then the medication started coming out of my leg from the other needle hole! 5. Lastly, those tiny little holes bled like crazy. All things that never happen and so I was convinced that it was some kind of crazy sign. Ahhhg! Haaha!
Good Lord. Fun times on MTX Monday (my new name for medicine day - "Sick Sunday" wasn't doing it for me, and I didn't want to miss out on a mimosa opportunity. LOL)
Oh Maren!
Some days! I have had days like this with the Enbrel, I did the weekly auto-inject first, then it was the powder that you mix and take biweekly, and I flubbed so many of those up! My husband was a great help to me, he helped me by giving me shots of both at first until I got used to the idea, and even getting it past my head, would always be knotted and bruised.
The MX never really helped, but the Enbrel did for 2 years, but just left me too wide open to infection, so now it's to the eye doc to get cleared to take Plaquenil. So we'll see!
I hope that you can find something that will give you substantial and lasting relief!
Wishing you well,
SK
I can't believe some people have had to wait years for a diagnosis, my god how did you cope?!! I had to wait 6 months and I thought I would have died if it had taken much longer. I must say after reading some of your stories about the cost of drugs etc. that I am so grateful for the NHS here in the UK. I take methotrexate (off the prednisolone now) Im hoping to come off the meth in year or so as my neurologist says you can try once you are 2 years post remission, roll on that day...
Hi Suze,
I am also involved in the CMT group here on Ben's Friends. There is NO treatment, I asked this question there, got two responses, one waited 45 years for a dx, the other waited 67 years! It just breaks your heart!
I hope that you come to the day to be MX free and well very soon!
Wishing you well,
SK
That's astonishing! Sorry for being ignorant but what is CMT? wishing you well too x
SK said:
Hi Suze,
I am also involved in the CMT group here on Ben's Friends. There is NO treatment, I asked this question there, got two responses, one waited 45 years for a dx, the other waited 67 years! It just breaks your heart!
I hope that you come to the day to be MX free and well very soon!
Wishing you well,
SK
20+ years of no answers, and made to feel like it was in my head, or fibromyalgia
20+ years of no answers, and made to feel like it was in my head, or fibromyalgia
I'm sorry that you had that experience, Charlotte. Certainly glad that you have the correct diagnosis now!
Charlotte said:
20+ years of no answers, and made to feel like it was in my head, or fibromyalgia
Hi Suze,
Here is a Mayo Clinic definition of CMT (Charcot Marie Tooth Disease) there are some similarities to Myositis, however there are NO TREATMENTS!
Maren Holzinger said:
I'm sorry that you had that experience, Charlotte. Certainly glad that you have the correct diagnosis now!
Charlotte said:20+ years of no answers, and made to feel like it was in my head, or fibromyalgia
Thanks Maren, I'm actually still waiting for it to be written on paper, in my records, see the Rheum. next month, at this point the "think that's what I have". Adolase is abnormal, EMG abnormal and going by my symptoms, biopsy was inconclusive, hoping to have another one done.
HI Charlotte,
Wow 20 years of that is enough to make you lose your personality! And that is being totally understated.
My Rheum told me that yes, I do have Fibromyalgia, most likely caused by the chronic pain of the Arthritis or perhaps the Sjogren's Syndrome! He also said it was the very least of my problems.
During my 2 years here at Ben's Friends, I have seem many people first join in Fibro, as this was their first diagnosis, and then get further diagnosed into Lupus, Arthritis of some kind, MS, Lyme, and a wide variety of autoimmune/rheumatic and neurological diseases. And there's a good chance that they still have Fibromylagia. Now I have no medical training, but Fibro is so much like autoimmune, and so many of the autoimmune diseases are so much alike....then theres the 'Overlap Syndrome' and overlapping autoimmune.
http://en.wikipedia.org/wiki/The_great_imitator
It's so complicated!
Charlotte, I hope that your medical team can finally 'get it together', and get something going to significantly improve your health!
Wishing you well,
SK
thanks, I feel strongly that it's Polymyositis, I have the pain, weakness, can't do stairs, can't raise my arms, rashes, the doctor said the abnormal Adolase shows muscle wasting, just need it to be on paper so I can know where to go from here. I am getting worse and want to have an idea of what the future brings.
Absolutely! I'm sure the stairs are a big challenge! My Mom is 6 months through a broken hip from a fall down the stairs! All from not turning on a light, and thinking she was on the last step! So please everyone, NO prowling around in the dark!
My biggest problem is riding in the car, then there's bending, sweeping, vacuuming, they are my biggest challenges!