[scrapperjen]

Well, I got the "official" word today at my follow-up. I have Undifferentiated Connective Tissue Disease. And psoriasis. And Hashimoto's. And fibromyalgia. Possibly Irritable Bowel Sydrome (is that autoimmune by the way?). I am in the process of getting a referral to a dermatologist and a nephrologist (kidney doc). He says that I have less than a 10% chance of this progressing to lupus, so I guess that's good. He told me that UCTD was a lot better diagnosis than a lupus one, though from what I've read on here and on the 'net, they seem to be one and the same just about. He then said that UCTD doesn't progress like lupus does/can, so that's why it's better.

He put me on Neurontin (sp?) for the fibro as the cyclobenzaprine wasn't working and Plaquenil for the UCTD. He is hoping that the Plaquenil will make the fluid around my heart and lungs go away.

In another post I mentioned that I was a bit worried about how my mom would react to this (thinking she was going to blow it off or whatever), but she really surprised me and actually believed everything I told her. She said she was glad that I was going to be put on the medication so that I could get better and I told her that this condition doesn't go away, even on medications. That got an "Oh........." out of her.

Hopefully I won't have too many (or better yet, no) problems with the medications!!!

 

[raggedyann1]

Jen,

UCTD is a "better" diagnosis because the prognosis is better. It is when Lupus is attacking things like the kidneys and lungs that the prognosis worsens. Otherwise when it comes to all the fatigue, joint pain and so on there seems to be little difference. The other thing with UCTD is that it can also just go away. The last statistic I know of is 18% of UCTD patients have no disease after 5 years. That comes from The Lupus Book by Dr. Wallace page 173 3rd edition.

Neurontin aka gabapentin is my main Fibromyalgia drug. It is the one that has made the biggest difference in pain levels. I also take Nortryptaline for Fibromyaliga. It is a trycyclic antidepressent that also helps patients achieve the deep levels of sleep which in turn reduces pain levels. It is common to be taking both Neurontin and the trycyclic's. What dose did your doctor start you on? Did he warn you that you are likely to feel very groggy at first? I am so sensitive to it that I only take it at night.

Let us know how you get on.

Take care,
Karen

 

[scrapperjen]

Well, it's comforting to know it may go away. I told my mother it would never go away......oops:blush: But, my rheumy suspects I've had this for about 6 years now, so I've passed the 5 year mark. I can always hope though It has also affected my heart, lungs, and the lining of my abdomen. Possibly my kidneys, but I won't know that for sure until I see the kidney specialist.

He also mentioned that the suspected psoriasis on my scalp may be discoid lupus. Huh. I was born with that, or at least that's what I've been told. It did go away for a brief time when I was a child, but it came back. I will be seeing a dermatologist for that, though he cautioned me that they don't like to do biopsies on the scalp, so I'm not sure what's going to happen there.

He has me on 300mg for the gabapentin. I am supposed to take one a day (at night) for 3 days, then 2 a day for 3 days, and then 3 a day after that. We'll see how THAT goes:lol: I can be a bit sensitive to "sleepy" meds too. the Plaquenil is 200mg.

 

[raggedyann1]

Jen,

Starting at 300mg seems to be the norm. I was started at 100mg and increased 100mg per week till I reached 600mg. If you haven't adjusted to the 300mg after 3 days I would suggest stretching out the steps in total dosage.

Will you only be taking it at night or when you add the 2 tablet is that during the day? Do you see the dermatologist soon? If you have psoriasis has he checked you for psoriatic arthritis? That is an auto-immune connective tissue disease. Just a thought.

Take care,
Karen

 

[Clare.T]

I am glad you've got the diagnosis and are starting treatment. It's good that your mother took it so well and I hope she doesn't start finding miracle cures.

You know it does not matter very much in practical terms what precise name is given to the disease, once it is clear that it is in the autoimmune connective tissue disease group. This is what indicates appropriate treatment.

What matters is how it is affecting you. Lupus is a general umbrella term for such a wide spectrum of symptoms ranging from myself minimally affected relatively speaking with nothing but skin, joint aches and pains and fatigue, to people with irreparable internal organ damage. It just happens that I have enough criteria for an SLE diagnosis. You have far more symptoms than I do.
With a bit of luck the disease will be controlled, the symptoms lessen or even stop bothering you : you will 'get better'. But the disease never completely goes - it lies dormant and might be triggered into activity again.

Your doctor sounds pretty good and thorough. It will be interesting to see what the dermy thinks and get some advice on how to treat the scalp condition. I would ask for a biopsy from forearm and or unexposed part, often the buttock, just out of interest if nothing else. This can confirm systemic disease.
The rheumy might be using the term discoid in a very general sense meaning any lupus skin other than the well known facial rash.

Having had a problem since childhood does not mean it isn't lupus related. Do you mean you were born with it or it developed soon after birth? You should tell the dermy about the history of this skin problem and any others you might have had over the years.
Does your mom have any arthritis or health problems, by the way.

I hope the kidney investigations go well and there's no real problem there.

The 200mgs Plaquenil is a low dose but often doctors start low to check tolerance then raise it to the more usual 400mgs. Always take it with food and drink a glass of water with it. Some flatulence and maybe diarrhea are quite common at first but should soon lessen. It takes several months to fully kick in so don't expect overnight improvement. If you do have problems taking it every other day is an option but you need to let him know and ask his advice. It is known to help lung problems.

He might also be going easy on the Plaquenil in case you do have psoriasis because Plaquenil can make it worse. Also if it really is psoriasis the treatment is different from discoid since UV exposure is often used for psoriasis but UV protection is essential for skin lupus

Did your doctor mention anything about eye tests ? It's usual in the USA to get a baseline done and checks once or twice a year thereafter. This is to make sure your eyes are Ok at the moment and to check there are no signs of damage being caused by the Plaquenil. This is very rare indeed but best to be sure when possible.

About IBS, I am not sure. There's a quite complicated distinction between various rather similar gastric problems that I can never remember exactly. IBS is sometimes used in a general sense. There can be an autoimmune association and there might be an autoimmune cause. It might even be related to the lupus.
If this is very troublesome it might be worth further investigation.

I suggest you get copies of all your test results for future reference even if you aren't very interested in them yourself. However, most people find that they feel more in control and can dialogue better with their doctor when they are well informed about their disease.

Let us know how you get on please and good luck !

Bye for now
Clare

 

[nemo_importante]

Hi

Sorry I did not see your post before now, but I haven't been on the site for a while. I also have UCTD, psoriatic arthritis and IBS, although now my rheumatologist thinks I may well have lupus. I am being treated with prednisalone and azathioprine currently. I hope your meds work for you and things become better.