Mixed Connective Tissue disease?

[Csteam12]

Nobody has even heard of this! I have been on plaquenil for eight weeks, and there hasn't been any change in my symptoms. A new symptom recently popped up. I lost part of my vision for about an hour. Then it came back. I'm really hoping the treatment plan changes so my symptoms will be relieved!

[Atibrat Moderator LUPUS SUPPORT]

Hi I have heard of it unfortunately but only because I was diagnosed with it in 2009. Did your doctor tell you it can take 6 months to see improvement with plaquinel? The first year I kept getting steroid shots every month. I was off of steroids for a couple years but now am on 2mg of prednisone a day for maintenance. Everytime I try to get completely off my symptoms get worse. I can't tell you I feel wonderful like I did before I got sick but it is manageable most of the time on plaquinel and 2 mgs of prednisone. It is hard but be patient and work closely with your doctor.

After taking plaquinel almost 2 years I quit because I did not think it was helping me. That was a huge mistake because I got very sick a couple months off of it and it took a long time to get my condition back under control.

Have you talk to your doctor about your symptoms of vision loss? It is very important to let them know of any new symptoms. I get that sometimes prior to a migraine but you definitely want to talk to your doctor.

Unfortunately CTD is not like an infection where you take a medication and it goes away, it is a disease that you and your doctor work together to try to control the best you can. I have learned avoiding stress and helping reduce my stress helps and getting plenty of rest. I need more sleep now but I control my overall symptoms better when I listen to my body and take good care of myself.

Hope this helps a little.

Tammy

[zzcat]

I completely agree with Tammys reply....I too was diagnosed many years ago with CTD and after many years of plaquenel thought I didn't need it. That was the biggest mistake of my life. I went out if remission and have been in a downward spiral that they have not been able to get ahold of since. I am now told remission is probably not likely.

Plaquenil is the mildest, most gentle drug you can take in the course of this disease and I would give anything to go back to being able to take it. Don't be afraid of it, and remember, for every symptom you feel on the outside, more damage is being done internally that you are unaware of.

Good luck to you, and stay with this forum as well, I believe if I had had this I may not have made the foolish move to stop my treatment.

Susan

[lupus-support1 Administrator]

Mixed Connective Tissue Disease (MCTD) is a very confusing term for doctors and patients. According to Dr Graham RV Hughes, this is a lupus variant condition and should be treated as lupus. What this means is that you have features of SLE and also other autoimmune connective tissue diseases eg scleroderma or dermato/poly myositis. To all intents and purposes, it should be treated like SLE according to Dr Graham RV Hughes, former Consultant Rheumatologist and Head of the Lupus Unit at St Thomas' Hospital, London.

MCTD is characterised by 4 major features:

1. Raynaud's phenomenon - cold finger tips and toes.

2. Prominent arthritis - "sausage fingers".

3.Absence or rarity of kidney disease.

4. Specific blood test - classical lupus have anti-DNA antibodies,but not MCTD. Invariably have anti RNP.

Plaquenil (hydoxychloroquine) is an antimalarial and is frequently used to treat SLE. May I ask what dose you take? Plaquenil can take some time to work and 2 months is not uncommon.

I would recommend you speak with your GP or rheumatologist and ask for a referral to an opthalmologist, that is, an eye doctor - not an optician. Sometimes, Plaquenil can affect the eyes. You should see an ophthalmologist every year. In 1996, St Thomas' Hospital, London completed a 5 year study on patients taking hydroxychloroquine (Plaquenil) using sophisticated electroretinography and other eye tests and found no damage to the eyes on the LOW doses.

Side effects of Plaquenil can include (mild) indigestion, tinnitus (ringing in the ears) and sometimes headaches. One RARE side effect is when hydroxychloroquine is started in moderate doses (such as 2 or 3 tablets daily), there can be a subtle effect on the eye MUSCLES, leading to a focusing difficulty or mild double vision. This can be frightening but the symptoms subside with lowering the dose. This is why doctors tend to start with 1 tablet a day, moving up the dose if necessary, rather than starting with 2-3 tablets daily. Plaquenil has shown to be low in toxicity and has been used successfully for many years.

Please contact me if you would like to talk. I have sent you a personal message as well.

As always - see your own physician if you have any concerns.

With good wishes,

Ros

[Csteam12 in reply to lupus-support1]

I am taking 200mg two times daily. I have started having more severe symptoms. Dizziness, migraines, swelling of my limbs.

[lupus-support1 Administrator]

I would suggest you contact your lupus specialist - if you started on 400mg a day, this may be the reason for your eye problem according to Dr Graham Hughes. I would speak to your doctor as soon as possible about all your symptoms.

Please let me know how you get on.

With good wishes,

Ros

[Hopey]

I also have a positive antibody (RNP) for mctd i have been on plaquinel now for just over 2 years i did not realy find any difference in pain for 4-6 months after starting plaquinel atm i am in pain all the time i am assuming this is a flare i am sore from head to toe this never goes away just varies from day to day i have been diagonised with CTD as i dont quiet meet the criteria of MCTD but have been told the pain fatigued and aching from head to toe is fibro have not had vision loss but have had blurred vision from tine to time and have been told this is more likely caused by fatigue and it is of no concern easy for doctors to say 😬 all i can suggest is plod along write down any new symtoms or anything that is different so when you do see your rhuemy youdont forget to inform him/her of everything i hope you start getting some relief soon 😎