Still UCTD

Hi all, I am still in limbo as the rheumatologist (the one I went to for a 2nd opinion) is saying that my diagnosis will likely stay at UCTD for the time being until they catch other things going on in bloods / tests.

Firstly, they definitely want to do a lip biopsy (should have been ordered 6 months ago but got lost in the system). My original rheumy says that this is a lot of pain for little gain as they are often negative but this does not rule out sjogren's completely.

Secondly, I have had for 4 years now a painful (often swollen) inguinal lymph gland up and down in my right groin. Sometimes the pain is so bad that I struggle to weight bear. They suggest a scan and possibly a biopsy of this too if necessary.

Thirdly, because of all the problems in my neck and shoulder they suggest I go on Pregabalin (a sister of Gabapentin) - a CT scan shows I have degeneration of C4-C7 with nerve root involvement at C5 - and they believe this will help. I was offered a nerve block which was then refused me last month as I turned down the Gabapentin earlier this year due to the acid reflux I was experiencing and the research I have done.

I am terrified of this drug. All my research into this says DO NOT touch this or Gabapentin as the side effects are horrendous and coming off them is harrowing for many. My sibling is on Gabapetin and cannot function easily and is often forgetful and slow. However, I have to work and need to drive to school and teach all day so need to be firing on all four cylinders. I know everyone is different and my need for a pain free life is immense, yet I cannot emphasise how distressing this decision is for me.

Does anyone have any experience of this drug?

Thanks in advance

BB

10 Replies

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  • Hi Bestbuddy. Although I'm still officially an RA person - I suspect I will shortly join the ranks of UCTD or else RA with some overlap. This wouldn't bother me at all as a diagnosis - but it does mean, having failed to tolerate 3 DMARDs to date, that I may just be stuck on low dose steroids for the forsseable future - which worries me because I hate being on any drug which I can't just come off. At least immunosuppressants can be tried and rejected without a lengthy tapering process.

    I suffer very badly from a painful parasthesia so I have tried Gaberpentin and it was terrible for me. I lasted about 3 weeks, became full of anger, was seeing double so couldn't drive and walked and felt like a raging drunk. Stopped and immediately felt much better.

    I tried Amitriptiptyline more successfully for 3 years but eventually it stopped working unless I hiked the dose up - which gave me terrible heart palpitations - so I had to stop. Then I tried Duloxetine and this wasn't so bad at all. I stuck with it at a fairly low dose for 5 months but decided to stop because I felt it wasn't doing much and my reflux was worsening. It proved a very hard drug to stop for me - terrible withdrawal symptoms including retching and headaches. I ended up back on it tapering by emptying a little more of the capsules down the sink everyday. Terrible flare of nerve pain in peripheries once I stopped but I'm used to that.

    Now the only drugs I can tolerate are Tramadol 100mg slow release, Lansoperazole 30mg and Prednisolone. And I'm tapering slowly off the Pred to be down to 2.5mg for a new rheumatologist I see in a few weeks time hopefully.

    I do say these days that having UCTD is like living in the shadowlands. Some HU communities people really hardly accept you, others tell you all your problems lie in the unacknowledged specifics of this disease, such as hypothyroidism (which I do also have). It's not a good place to be but at least I feel there's a possibility it will all get better one day or not get worse and my organs and joints will continue to rumble with displeasure rather than be destroyed by a more aggressive disease. So I suppose I'm saying that here in the world of the undifferentiated there is at least some hope.

    Not much help regarding your decision re Pregabalin but I can only relay my own experiences. As you know each of us reacts differently to these type of meds. Good luck getting back to school. If it were me I'd be tempted to try it at least but only for a few weeks perhaps?

  • Forgive brevity. Everyone reacts differently to meds, but my experience of Gabapentin was similar to Twitchytoes'. Sorry. Def worth asking what other options there are . . . Good luck!

  • I was in a similar situation for years, under a wait and see Rheumatologist in case something significant would appear in my blood. The result was years of misery and having to give up my job which I loved ,and was latterly only part time, due to my dire fatigue.I also was a teacher.

    My life was disappearing before my eyes, I could barely function at all. At last my sadly retired excellent GP sent me to a different Rheumy who did a trial of steroids and I improved amazingly.

    I am now on a steroid injection Depot Medrol every three months and about to begin Mycophenolate next month with the hope we can reduce the steroids.

    I did try Gapapentin and also Pregabalin, but found the side effects of both dire. I found Tramadol the best painkiller for me.

    As Twitchy has said it is awful to be in this limbo land, you have all the suffering but no answers and very often no treatment.

    I have Sjogrens with possible Lupus overlap but have so many symptoms that overlap with many other types of Rhematic disease. I am to be given Mycophenolate,without first trying the other DMARDS,due to biliary and pancreas problems.

    I do hope you get some relief and progress made. Maybe you should let them know just how hard life is for you and the struggle to keep working.

    All the very best. X

  • Hi as carcrashgal says everybody reacts differently but hers,twitchytoes and my experience of it all sounds very similar as with personality change.I see you work at a school so warn if it causes the same psychotic raging drunk type reaction in you being around children would not be good! I also swelled up like a balloon and couldn't drive for two weeks after first time no driving in 30 years.So you could try tramadol as suggested ,starting on a Friday night to have weekend to adjust to any reactions ,not a miracle but helps hubby a bit with fibro,and osteo.

    Take care and hope you get some relief soon

    Effie

  • Hi Best buddy

    There are many of us on here who have a diagnosis of UCTD, read an excellent article recently explaining it's three possible CTD's our bodies have symptoms have !. Have not known this, so no wonder we can feel so lousy!.

    I have taken Gabapentin for years with no side effect problems only pain relief benefits. Tried to make the switch to Pregabalin and had a horrid time!. Had to go back to original Gabapentin dose but I do realise we are all different! For you I guess the decision is how badly do you need the pain relief to try. Good luck. X

  • Hi! Firstly I would like to say that I tried gabapentin and it did nothing for me at all, but each to there own. Uctd is most definitely a diagnosis my dear, I have uctd and I know the limbo feeling all to well! Especially when your rheumatologist acts like this is not a real diagnosis when in fact it is. I run a blog called The Butterfly Diaries on blogger :) im also on facebook twitter and Google plus, if you need any advice or information on uctd and coping with all the aspects of the disease I am always willing to help :) please feel free to look for me and ill try help you where I can.

    Loubie xxx

  • Last I heard my diagnosis is lupus-like UCTD. It has been lupus before, as well as MCTD and fibro.

    I didn't have terrible side effects on gabapentin. At first I was sleepy, but that wore off. I do think it helped. The side effect I just couldn't tolerate anymore was weight gain. (I gained 25 lbs. I kept waiting to stop gaining, but it looked like it wasn't ever going to stop.) However, I took one dose of Cymbalta and practically dropped to the ground. Actually, climbed into bed and hoped I would wake up. Threw away the whole bottle the next day.

    So, I just don't think you know until you've tried it. Some people do well on Cymbalta. Not me.

  • What is the U for in UCTD?

    Thank you to anyone who wants to answer!

    Lorelei

  • The U stands for Undifferentiated. I think this basically means that they suspect that the cause of the symptoms is some form of connective tissue disease but they don't have a definitive diagnosis.

  • Thanks for your lightning-fast answer!! Now I can do some Googling.

    I have lupus and fibromyalgia, but like to have knowledge of other autoimmune disorders as well.

    Lorelei

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