Joints

[Juniper]

I posted a few months ago because i'd started with rheumatoid Arthritis and was in constant pain with my joints.

I am now under a rheumatology clinic and they are giving me methotrexate and steroids. Just wondered if anybody else is taking these?
Its the first time ever that i've had to take something that i'm really not happy about. My CF doctor said he dosen't like me being on the methotrexate either as it lowers the immune system and steroids can mask the fact you have an infection so i have to be extra vigiliant for any new symptoms.
I know we all watch for any changes in our health but i don't want to go overboard.

I'd rather not be on either of the drugs but the pain is bearable now compared to what it has been.

Has anyone else felt like this? Or is taking this combination for sore joints?

 

[Lena Bean]

I have been wondering what would happen if someone with CF had rheumatoid Arthritis or an auto immune disorder of any sort. It doesn't seem right that they'd make you take methotrexate. My mother used to be on it, and she used to get a lot of really bad infections because of it. I'd talk to your rheumatologist if I were you and tell them that you need a different option. There must be something else.

 

[JustDucky]

I was on MTX years ago when docs suspected undifferentiated collagen vascular disease and vasculitis, prednisone was also given to me. At one point, so was plaquenil. MTX can affect the lungs adversely, cause them to stiffen, fibrose and the doctor watched me for that while I was on it. Thankfully, I wasn't on it for long....the steroids were another story...I was on fairly high doses off and on for over a year, yes it helped my joints and severe headaches (from vasculitis), but it really did a number on me. Infections were very common, fevers were masked so I had to be super vigilant as far as signs and symptoms go. At this point in my life, I was not diagnosed with CF yet, but I was sick constantly with lung infections and hospitalized 4 times a year for respiratory issues that were attributed to "asthma" or pneumonia etc.

These days, I am no longer on either of the meds above, it was found that I have Ehler's -Danlos syndrome, a collagen deficiency that is genetic. Prednisone and MTX would do more harm than good in this case.

Just be really careful, hopefully something down the line can be used instead of the steroids and MTX.

Jenn 40 wCF

 

[Juniper]

They said that as i keep so well the methotrexate shouldn't be a problem . The CF clinic are keeping a close eye on me and i'm having regular CT chest scans.

But i'm still not happy being on them. I will have a chat with both doctors when i go back. I'm seeing one on 3rd Sept the other 8th Oct.

 

[Solo]

I had an MRI of my hips, and the findings were that I had excessive cartilage loss. The ortho told me usually people in my shoes take pain meds/and or injections to ease the pain until it gets to bone on bone. But he said since I'm diabetic that those are not viable options. The only remedy for my discomfort, he said, was a total hip replacement. But he said that he wouldn't feel comfortable doing it as I'm only 32, he said that he's replaced hips on other young people, but for the most part, they were all healthy besides. He said with me, there is always a chance that another complication can arise from a hip replacement, and he's not qualified to treat CF or diabetes. He reffered me to joint docs at Penn State.

But I think I will ride it out as long as I possibly can. I spend a great deal of my paychecks on different supplements to see what works best. I have a whole backpack filled with bottles with notes attached listing the side effects I suffered.