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Still no Dx

548 Views 7 Replies 6 Participants Last post by  pcampbell
Hi everyone It has been awhile I got realy sick for a little bit. The Dr sent me to Chicago for more tests but no results as of yet. My RHUMY just started me on the Methotrexate last week today was my 2nd dose. I have to tell you it does help me with the pain I only had to take 2 vicodin today and that is from 1 and a 1/2 every 3 to 4 hours. I still have good days and bad days but overall I feel alot better with the new meds I just hope it keeps up like this. I do get realy tired after taking the methotrexate though is that common ? My Doc uped my prednisone to 30 mg too that helps too. He thinks it might be ANA neg Lupus but wants the results from Chicago first those were all for rare muscle disease and the Doc up there thought it is Lupus or another autoimune infamitory thing going on I just wish I could get a Dx. But at least I am actualy getting the treatment now so we are getting closer .

Laurie C:)

PS is there anything I should know about the methotrexate???
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Sorry He did say that as for now till I see him again in a few weeks he is calling it mixed connective tissue disease do any of you Know what this means ???
Thanks for asking that

Laurie, I am so glad you asked that question. I have never posted on here before - I am really shy, and feel inadequately informed compared to everyone else on here. I just started this journey last year. My rhemy has been very cautious with labeling all my issues. However, the last time I saw her, she mentioned that I had mixed connective tissue disease, spondilitis (or something like that), inflammatory arthritis - which is RA - and not quite ready to affirm Lupus. I have no idea what the actual DX is, because I don't know what mixed connective tissue disease is. I do have a confirmation that what I have is autoimmune issues. I am on Plaqunil, and antinflammatory drugs for all of that. They were helping for a few months, but now I am in a great deal of pain in my hands, fingers, hips, back, and knees. It is really bad right now, and I don't see her until August. I don't want to be a baby, so I am hesitant to call her to check it out. Oh, and I have fibromyalgia, so I take Lyrica as well. (of course some people think this is no big deal - but, I know it is real as far as my pain issues - and Lyrica has certainly changed my life in that regard).

Anyway - sorry to ramble on my first visit here, but I would so like to know what all this means. I read on here all the time and have learned so much.

I am anxious to hear anything else that anyone else knows about all of this. I just sort of feel dazed and confused.

Bless your heart for all your issues. I know it is overwhelming to get all this information and not have a clue what it means or how to make it all go away.

All my best to you and thank you for listening to me.
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Hi Laurie and welcome, hi too pcampbell,
I have just been diagnosed too with MCTD.
I have terrible joint pain too and also have spondilitis and oesteo arthritis in my knees. I get terrible pains in my back and hands, arms and am really struggling mobility wise compared to how i used to be.

I have pasted in this link as it gives really good info on MCTD. All i would say is pleased don't get scared by reading it.

Good luck to you both and i hope things improve for you soon.

Take care

Good Luck

Cassie :)
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Hi Laurie...

I was originally diagnosed with MCTD then UCTD... or vice versa :lol: I really can't remember... and then eventually I received the Lupus diagnosis... It can be very frustrating... but it is so hard to diagnose this nasty disease. All I can say is keep your head up, and hang in there and stay positive... I think we have all been through this crazy stage and I thank God for the people on here who helped me through that period of my life. I don't know much about Methotrexate... but I KNOW that plenty of people on here have been treated with it...

Good luck to you sweetie...
One of the more important things to know about methotrexate is that you should also be taking folic acid with it (either every day of the week or every day other than dose day). It's also very important to NOT become pregnant while on this medication. The folic acid minimizes side effects and keeps folic acid levels up where they need to be ;)

Good luck with everything - it's great it is helping so much already!
Welcome to the forum pcampbell :)

I hope you will find the information very useful for your understanding of what's happening and making it easier to talk with your doctor, and the support useful for making the best of things.
Many people have a variety of symptoms of autoimmune connective tissue diseases of which SLE lupus is one. Most have 'inflammatory arthritis' as a feature Others are described and defined as rheumatoid arthritis, scleroderma, dermato/myositis, and Sjogren's is included because it has so many similar symptoms.

MCTD and UCTD both describe certain mixes of symptoms. Mixed Connective Tissue disease refers to an overlap condition with features of lupus, dermatomysositis/ mysositis, and scleroderma plus a few other typical findings such as 'sausage' fingers and Raynaud's, and on the lab side characterised by high levels of an antibody called anti RNP. Undifferentiated Connective Tissue Disease refers to an autoimmune connective tissue condition that doesn't have any specific features of the others: in the case of lupus this means no anti dsDNA antibodies or anti Sm antibodies and no biopsy proven skin or kidney problems. I am sure that many doctors simply diagnose ' lupus' often with the annoying prefix ' mild', meaning no organ damage.

With MCTD one of the conditions can come to predominate and with UCTD, although the majority stay the same, one of the distinct diagnoses might emerge over time.
In terms of treatment options these diagnoses make very little difference. In personal terms, it is best not to have an SLE diagnosis because of the dire effect this has on getting insurance.
Here is an article with more details about MCTD and UCTD

If you are worried about seeming a baby you will not get the best possible treatment for yourself, to put it rather brutally. You have the right to get the best treatment available to improve your quality of life and keep it as normal and fulfilling as possible. If you don't tell your doctor about your pain she can't know and won't investigate the causes ( there are many sorts of pain and causes) and the most suitable remedies. There is nothing heroic or saintly about putting up with pain unless it can't be relieved any more effectively.
A good doctor will be concerned.

I suggest you get your blood test results and read up about diagnosis to get to know your disease and why that diagnosis was arrived at. We'll help you all we can so you can live the best and most normal life possible with your symptoms well controlled.

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Thank you

Thank you so much. That website is wonderful. I have been reading it non stop. I understand now why she is being so careful with her "labels". I have really tried to feel better, and have for the most part. However, this pain just sort of came up on me without any warning about a month or so ago. I thought that it might have been due to some stress - school letting out (I teach school), and then my sister in law passed away. But it is getting worse every day. I am sure my rheumy would want to know - I just keep thinking that with all the meds I am on, it will subside. Guess not!

Thanks again - I will be back to read more. Going to call the Dr.

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