Newly diagnosed

[bunch1974]

Hello..

I have had fibromyalgia and CFS for years. This last May after a period of stress and too much activity I woke up one morning almost unable to get out of bed. Once up I couldn’t stand up from the toilet without great effort. I developed aching upper arms, shoulders, back and neck too, plus much more fatigue. I kept thinking it was a CFS/ fibro flare, however in Sept when I returned to Florida for the winter things were if anything worse. I went to my primary care doctor who ran tests and thought it could be PMR and prescribed 10 mg Prednisone. Within 24 hours the pain began lifting and continued to do so- I still take that dose.

Finally I was able to see the rheumatologist after a 6 month wait last week. He did a thorough physical exam and ran more extensive lab work. Today the nurse called to tell me that the doctor diagnosed me as having Undifferentiated Connective Tissue Disorder and was prescribing Plaquenil.

Looking for any insight or suggestions any of you have about UCTD and taking Plaquenil.

[MissusTee]

Hi,

Plaquenil, or hydroxychloroquine is a DMARD (disease modifying anti rheumatic drug). It takes quite a few months for it to build up in your system and to work effectively. You will need yearly eye tests, s it can cause problems with the retina, however I have found it to be very useful. Hopefully you will find these forums useful!

[bunch1974 in reply to MissusTee]

Thank you for your reply ☺️ I will be having my first dose of Plaquenil this morning and am hoping for few side effects. It’s been a long painful journey getting to this point and I’m so looking for relief. I’m thankful to have found this support group.

[whisperit]

Hello bunch1974

Click on the "Home" button at the top of the page and you'll find there's a panel on the right hand side of the page that takes you to an extensive range of LUK leaflets, free to download, that should explain a lot.

Briefly, Plaquenil has the generic name hydroxychloroquine (HCQ) and is prescribed almost universally for people with systemic autoimmune disorders like lupus/SLE, UCTD, MCTD etc. It damps the autoimmune response somewhat and is usually well tolerated (a lot of people here seem to get stomach upsets in the first few weeks but that usually settles down). You do need to schedule eye tests at least annually though, and let your opthamologist know why.

I also have UCTD as my 'first' diagnosis. However, in the 5 years since being diagnosed, the same theumatologist has also called it "Connective Tissue Disease with overlap", "Autoimmune Interstitial Lung Disease with overlap features", "Systemic connective tissue disease", and some others. I also have diagnoses of fibromyalgia (which in my case would more accurately be called CFS) and polymyositis. My point being that these systemic autoimmune conditions are a very mixed bag and although there are agreed criteria for classifying the different disease presentations, in reality, our bodies have not read the medical textbooks. They kind of do their own thing regardless. I feel like the best way of viewing the diagnosis is as a convenient shorthand; a decent rheumy will treat you according to the specific issues that you have at any given moment rather than worry about whether your label is SLE, UCTD, MCTD or whatever.

It's still helpful to know stuff though! So here's the British Rheumatologists' guidance academic.oup.com/rheumatolo...

Hope that helps x

[bunch1974 in reply to whisperit]

Thank you for your reply and all of the information and insight. It really helps to hear from others who have similar disorders , especially in the beginning when everything is new and confusing. I’m looking forward to starting the Plaquenil today and hoping for few side effects. It’s been a long journey getting to this point 🌼

[Goldyukr in reply to whisperit]

I love your explanation of all this, whisperit. I’m still in no mans land myself. No rheumatologist wants to see me (because my labs don’t show much) although both neuromuscular experts I see feel it’s autoimmune and my body has responded well both to prednisone and Imuran (immunosuppressant). That alone shows it’s autoimmune. He says I have nonspecific myositis with secondary neuromuscular junction dysfunction (possible myasthenia gravis), autonomic and small fiber neuropathy, stroke among other things. So it’s most likely overlap but no specific name. It’s hard to answer when someone asks what I have. Hope the meds work well for you. I asked about being put on plaquenil at my last appointment as I have a lot of pain and exhaustion and that’s supposed to help with that. Let us know how it goes.

[whisperit in reply to Goldyukr]

Thanks. Aren't your neuromuscular experts able to refer you to a rheumy? If they feel autoimmunity and myositis and neuropathy are happening - and you clearly have symptoms, it doesn't make sense. Have you raised the possibility of a tissue biopsy? x

[Goldyukr in reply to whisperit]

I just requested that and waiting to hear. I’m thinking to ask about biopsy but haven’t done so yet.

[KayHimm in reply to Goldyukr]

Neurologists treat myasthenia gravis, which is an autoimmune disease and the neurological complications of systemic autoimmune disease like lupus. They may think that is the best specialist with your particular symptoms. Unless they suspect lupus or another connective tissue disease the rheumatologist will not be of much help. Just ask the neurologist. They should be able to answer the question.

Hope that helps. Good luck. I have autonomic neuropathy and am happy to share experiences.

XK

[Goldyukr in reply to KayHimm]

I agree with that but I also have bad polyarthritis and osteoporosis (from prednisone) among other things.

[KayHimm in reply to Goldyukr]

I would definitely want to see a rheumatologist for those issues.

[loopy4me]

My experience is similar to yours. At 53, diagnosed with PMR for the 2nd time. The first time was at 46. 20 mg prednisone had immediate affects. During a slow taper of 6 months and down to 5 mg prednisone, I received a second opinion from another Rheumy. He diagnosed with 400 mg of hydrochloroquine and took me off the prednisone. The hydrochloroquine is to prevent any more flare ups of Lupus related aches and pains. The Dr basically said if I didn't get on a DMARD of sor, then flare ups will be common as I age. It's been 7 months on hydrochloroquine and feel great. It's helped with my weird other symptoms too, such as blue feet and frequent urination

[bunch1974 in reply to loopy4me]

Thank you for replying loopy4me ☺️

It helps to hear others have had similar issues.

I have a follow- up appt on March 21st and I’m thinking the rheumatologist will have me start reducing me off of the Prednisone and have me just continue on with the Plaquenil. I’m so looking forward to a reduction in pain and fatigue...🙏

[nanleighh]

Hydroxychloroquine or plaquenil was a miracle drug for me. I was diagnosed with lupus in 2014 and I’ve had pretty profound muscle weakness and pain. As well as joint pain, facial rashes, and severe fatigue. It took a good eight months for it to kick in and I did have G.I. issues with it nausea in the beginning, but that subsided after a while. It has really changed my life profoundly for the better. My muscle weakness has almost completely subsided, my joint pain as well. I still do suffer with severe fatigue and facial and neck rashes off and on. I would say, do not give up in the beginning because it does take a while for it to kick in. Some people say they see results with two or three months but like I said for me it took a good eight months, so don’t give up! I wish you the best of luck with your journey in this. Take care🍀

[bunch1974 in reply to nanleighh]

Thank you for your reply nanleighh ☺️ I’m happy to hear that there is a “light at the end of the tunnel” so to speak. I’ve dealt with chronic fibromyalgia/ CFS pain and flares for years, but the pain and fatigue this time is so much more severe along with the face rash, dry eyes and mouth, heat and sun sensitivity, etc.

Thanks again for the information and words of support 🌼