Okay, so this will be more of a whine session...sorry in advance.
DX'd in December with MCTD, on 10 mg. prednisone and 20 mg. of MTX. I have a couple of days here and there that I feel not so bad with a little energy, but many more days of feeling awful. I'm still swollen, still red, still tired, lacking energy, still have pain and the side effects of the two drugs isn't fun. I'm gaining weight and going bald. Makes me wonder if this is all
I go back to the rheumy in August. He had mentioned plaquinil a while ago, but changed his mind because "there are only so many drugs for this and I'm afraid if we start something else already you'll be left with nothing down the line". I get that. I was happy that he was thinking this through, however,
not sure I can go on and on like this.
Good morning. Obviously, I can't know whether your rheumie is on the mark or not. But what you posted makes me wonder the following (NOT that I have an ounce of medical training!)---
1. Do you have copies of all your bloodwork, especially what it looked like when the meds were first prescribed (basic & the vrs. autoantibody tests)? Was anti-RNP positive? That's the one considered "defining" for MCTD.
2. Are you anemic (just curious)?
3. When you say "red & swollen", do you mean joints? Skin?
4. Do you get rashes? If so, where & what do they look & feel like?
5. What's your hair loss like? Bald areas? Or breakage along the hairline?
6. Do you get much exposure to sunlight?
7. Your rheumie's comment on meds, about "there being nothing left down the line", actually seems almost BACKWARDS to me. Why? Because Plaquenil & the other antimalarials are considered "tier 1" (the lightest) meds; then steroids are "tier 2"; and, finally, immune suppressants are "tier 3". Which *isn't* to say that you shouldn't have started out on tiers 2 & 3, by the way...! Only that his comment seems to characterize the "tiers" BACKWARDS.
I hope others chip in soon. I'm reallt sorry you're having such a tough time of it. Sending all my best, Vee
As usual, Vee's comments echo my own thoughts. Plaquenil was the 1st medicine I was put on and so far have never needed the steroids. Plaquenil fools your immune system into thinking all is well and does not have the puffy face/weight gain/etc. side effects that steroids have. I'd wonder if the doctor who put you on steroids first has any other lupus patients in his care?? I'd consider finding a different rheumie as steriods are the big guns. There are cannons, too, but first things first! Of course, your initial ANA level may have made the steroids necessary, but for my other concern ......
I'm also concerned that you were put on such strong medicines and had no follow-up for 6 whole months. What's that about????? I'm no doctor either, but as a lupie for 8 years, I have some personal experience. My doctor retested my ANA several weeks after I first saw him. My first ANA was 1:40 (big whoop) and 6 weeks later it was 1:600 or 1:800 and that got my attention. It was then I was started on Plaquenil and that helped a lot.
If you read many of the posts here, you're bound to find me tooting the "Stay out of the sun" horn. Regretably, sunshine makes all of the lupus symptoms much worse and they can remain annoying for weeks. The simple step of covering up before going outside including a broad brimmed hat, sunscreen SPF 45+, and avoiding being out during the hottest parts of the day in your area will do a lot to improve how you feel. Give it a try for a few weeks and see!
We lupies are also sensitive to heat. A lupie friend in hot, hot Texas has an ice collar that she wears to and from work. She keeps it in the freezer at home and at work so she can tolerate the heat in the car as she back and forth.
If you haven't read the stickies at the top of this thread, I suggest you do so as they are very informative.
Be sure to ask for a copy of all of your lab work as having a file by date will help as you and your doctors manage your chronic illness.
Hope you can find a lupus-expert rheumie who can better manage your symptoms. With a good doctor, care, and a few precautions, life can be pretty good.
I have RA with my lupus and I believe that RA is sometimes part of the MCTD package. If that is what you have as well that would probably be why he went with the MTX and prednisone. MTX usually works better on RA than plaquanil and then sometimes they will add the plaquanil to the meds if the MTX isnt enough to get you off the steroids. I took MTX and have been on steroids for 3 years now. Ranging from 20 to 60 mg a day with the exception of the pulse therapy which is higher doses. The MTX couldnt get my lupus under control so they have now changed me to Cellcept and I am still having to take the steroids but I have only started the full 2000 mg a day today so I am keeping my fingers crossed that it will help. To be honest I am worried it wont since I actually feel worse now but I am really hoping it is just due to the fact that it hasnt gained the full effect yet.
My next try will be Cytoxan according to my rheumi. I am just scared of that stuff more so I really am praying that this works. I cant take plaquanil due to my eye problems and my CNS symptoms are getting worse.
Does anyone else see double vision after looking down for a couple of minutes???
I also echo what they said about the sun...it is NOT your friend. Keep that in mind at all times. I live in Dallas and it can be brutal here, although we are actually getting a pretty mild summer this year..We haven't hit 100 degrees yet!!!!
Hope you do well on the MTX. You have to have your blood work done every month on that so make sure he is watching your blood work and remember no alcohol... it is hard on the liver as it is (my liver bloodwork got pretty bad and I got the shingles) so do not drink. Keep in mind even that Nyquil has alcohol in it as well.
I have MCTD - Lupus/Rheumatoid Arthritis/Raynauds/Srogrens.
I've seen the rheumy about every 6-8 weeks. My ANA was 1/10240 and my RNP was 178, both extremely high. That's probably why he jumped right in with the Prednisone and MTX. I was at 20 mg Prednisone, but down to 10 mg. I guess that's part of the issue, the releif isn't the same at 10 mg but the Prednisone isn't great for you long term so I understand why I went down.
I also tried to cut it down to 5 mg, but that was a no go.
When I say red and swollen, it's my joints. I can feel the warmth over my red swollen puffy hands. I can open some jars on some days and can now turn on my own water faucet most days, but it's still painful.
At my second rheumie appt., he said we would be starting the Plequinil along with the other two meds. I was kind of excited because I thought I'd get more of my old life back. When he didn't add it in, I was bummed yet delighted. Quite the mix.
I go back to the rheumie in about 3 weeks. I really need to find out what's next, if anything. He just said that my numbers are so high and that's why he thinks that it's too early to use up all the options. I'm confused...
I do have confidence in him though, I actually like him a lot. He's the director of a teaching hospital in Boston so he's no dummie.
I guess I can live like this and make the most of it, but the weight gain and losing hair has pushed me over the edge. Oh ya Veej, the whole top of my head is where my hair is falling out. If I hold up the hair on the top of my head it truly is just a few strands. You can always see my scalp which is the pits.
Glad to hear you're with a rheumie from a teaching hospital and that he's been following you regularly all these months. Whew!
One thing I had a problem with that caused my joints (hips/knees/ankles) to swell painfully was my unexpected allergic reaction to Celebrex. Any chance that's one of the meds you're taking? Many folks with lupus become allergic to sulfa and Celebrex has a sulfonamide in its chemical makeup. The first doctor I saw started me on Celebrex and the rheumie was doctor #4 for me. He deduced most of my problems were complicated by the allergic reaction. Once off Celebrex and on Naprosyn, I had no more painful swelling in any joint. Glory be! Perhaps, perhaps this is also your situation?
Hi, NHCasey. Wow... With your latest post citing the very high ANA & very high anti-RNP, your earlier post takes on a fuller meaning. I'm glad you have a top-notch rheumatologist & are seeing him frequently.
In his hardcover, Dr. Wallace discusses MCTD briefly, so I just re-read that section. He says the condition resembles lupus, but also includes puffy hands, heartburn, swallowing problems, and possibly interstitial lung scarring. Raynaud's is almost always present. (Great book, by the way! It's available in most libraries & bookstores.)
Dr. Wallace also says that in one study, 5% of SLE patients also met the criteria for MCTD. Which fits what your rheumie has called lupus + MCTD, I guess...? And you ALSO fit the full diagnostic criteria for RA & Sjogren's?
In his section on treatment, Dr. Wallace makes a point of stating that the antimalarials are NOT appropriate where there's major organ involvement. So that seems to fit with your dr's saying he's holding off because your numbers are still high. Maybe you can ask him to clarify further & properly?
Gee, I wish I had something practical, big & helpful to offer... I imagine you ALREADY take sun precautions, given that so much of what you experience falls within the framework of lupus? I hope you have much better days soon & that your upcoming appt. goes well. In the meantime, we'll all look for your posts! All my best, Vee
Thanks for reading that in the book Veej. Yes, the only thing he didn't do was the test for sjogrens where they take a little of the inside of your lip but my parotid glands get huge (I call myself a blow fish), my tongue is swollen a lot and I'm lacking the liquid in my mouth and my eyes are kind of dry. He said that with all of these, they take on a similar course of treatment anyway. He said that this is rare, as most the time you may have some symptoms of a couple of these autoimmune diseases but my numbers are not budging.
I'll be asking more questions this time. Everyone said that this will take time. Silly, but it is the hair and weight gain that brought me over the edge. I think I've handled this well so far for the most part.
I'm also going to get that book! Anyway, thanks for letting me rant and giving me some suggestions. I really appreciate it.
Good morning, NHCasey. I first borrowed as many books on lupus & its close cousins from my local library. Then I decided which ones to buy.
I was never formally tested for Sjogren's either, despite my being positive for ani-Ro (I have the SCLE subset of lupus). Weird, but this summer, for the first time in the 7 years since I was dx'ed, my eyes became so nastily dry & uncomfortable that I went to my eye dr. twice. The antibacterial ointment first prescribed made my eyes worse, so I d/c'ed it after a week & switched to artificial tears, per my eye doctor's instructions. Those liquid tears gave me immediate relief. (Just a thought.)
You hang in there, OK? And wear those hats, long sleeves & pantlegs, & sunblock if you're out during high sun, OK? (Can't hurt.) Thinking of you & hoping you find some relief SOON. Always, Vee