Newly diagnosed with lots of questions

After many years of being sick on and off and after three years of being really sick, I was finally diagnosed with Mixed Tissue Connective Disease, MTCD. I got this diagnosis in a phone call and have not met with the doctor yet to ask all my questions. I go to the ophthalmologist later this morning for an eye exam to see if I can take plaquenil.

I have so, so many questions. I guess I will start with the one most on my mind. I seem to be doing worse now that it has gotten hotter here. I live in South Alabama and our summers are usually much hotter than this year but it has rained almost every day since the end of June which has kept temps down. But now the temps are soaring and I can barely function. I I don’t get my stuff done in the morning, it is not getting done.

I also want to know if anyone else who is taking plaquenil can tell me what to expect. Does it help and how does it help? I don’t expect to be back to my perfect (LOL) self but I would like to be able to work in the yard and exercise, etc. to some extent. And I would really like to be able to write two paragraphs without losing my train of thought.

I have many other questions but can’t think of them right now. I appreciate any help you can give me.

Mary Beth

I have been on Plaquenil for a year now. I kept a pain diary. At first I had a hard time, it takes a while to get in your system so my pain didn’t seem to go away. My experience was the stomached side effects, loose stools and slight nausea. It didn’t require any time off work but anything with stomach and bowel seems to make for a miserable day for me. Around 4 months all those symptoms left. Looking back at my pain diary this is about the time my pain started to lessen. I started having really good pain free days (after the initial get up). However I still had bad days. I know it is still working cause I still have those really good days. What is frustration is the bad days. Before Plaquenil; swollen, hot, painful joints and movement were everyday. I swear my pain tolerance was higher. But now that I have really good pain free days so the pain on the pain days feels worse. Maybe it is just me.
My advise once you start give it a good year. It’s a slow process. The only thing it did help immediately was the dry mouth an eyes.

Thanks Tanya. That is both encouraging and discouraging. I am so hopeful that it will work but a year seems like a loooooooong time. But I have been sick for so long and have not had a good day in what seems like forever. I am unable to work right now but would love to get to the point when I can get back to work. I have been feeling worse the past few days but I think part of that is the stress of having to wait for something that will help. Thankfully, the eye doctor went well this morning so I just have to wait for his report to get to my rheumy and then for them to call it in. Maybe two or three days. I am glad to hear that you work because I really miss working and the freedom that comes with it. Have an awesome day!

Hi There,

Sorry to hear about your diagnosis. It is hard at first to come to grips with it but it gets better over time as you learn how to handle it. I have been taking Plaquenil for about 2 1/2 years. I did not have nausea when I first started but I did have some mental changes (kind of up and down with a lot of anxiety). This went away after a few days. It also takes quite some time to kick in (for me it was about 6 months). My experience after that was very similar to Tanya's above. It is not 100% mostly because there are bad days. My joint swelling did not completely resolve so I have been on 5 mg of prednisone as well.

Patience is one of the many lessons of autoimmune diseases, as is learning how to rest when you need to, looking for good things and counting your blessings especially when things are bad, and accepting that things change constantly. I hope you get your meds soon. That made me feel as though I was at least doing something to get better.

Bless your heart! I have taken Plaquenil, for my SLE Lupus, and it didn't help me. Do all of the research you can and find out what the side effects are. Go in with a positive attitude and see what you need to do to take care of yourself. I live in Katy, TX and our heat and humidity are just like your area. My strength goes away as soon as I try to do anything outside of the house. You will need to pace yourself and do not go out in the sun without protection....that is just the way it is with our illness and the meds that we will need to be on.

I know this is a scary feeling, but try to think of this as a new way of facing life head on. This is what gets me through each day....I'm determined to fight this battle and will not let it get me!

My heart is with you! Lori

I've been on Plaquenil for 1.5 yrs. My initial side effects were some stomach issues and ITCHY SKIN. Watch for that. My skin itched so bad I had to use cortisone cream. However, it eventually went away. Plaquenil for me has helped tremendously for the joint stiffness and swelling. I had occasion to stop Plaquenil for 2 weeks about 10 months ago. Boy did I feel the difference!! I went back to being so stiff I could hardly walk and having severe back pain. For me, its a good medicine. I hope it works well for you.

Thank to all of you for your help. I went to the ophthalmologist yesterday and got a favorable report. So I called the rheumy’s office and just put a bug in their that those results were coming in the next day or so. When I spoke to the nurse, I asked her if the doc would just caliche plaquenil or I had to come in to see the doc. She said that the doc would probably go over all the results at my next visit (which is in four months!) I asked her if I had to wait four months to get medication that might help me and then she got very evasive and said she didn’t know what the doc would do. She also said that the doc wanted to wait and see what pain management said (I have an appointment tomorrow.) I feel like I am getting the run around and no straight answers from anyone. They say one thing one day and a different thing the next week. I am going to go to pain management just to jump through their hoops and then I will call to get an appointment with the rheumy way sooner than four months. I feel like i am beating my head against a wall (and it hurts!)

Loriken, I lived in Houston for 25 years- moved there when I was 18 to go to Rice U. I was a social worker and had many clients in Katy so I am very familiar with the area. Have they gotten anywhere near finishing the I-10? Boy, I hated that freeway.

Have a wonderful day.