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Connective Tissue Clinic Today

681 Views 19 Replies 18 Participants Last post by  karen.w.
Hi all,

I thought I'd post an update on how my appointment went at the Connective Tissue Clinic. I'm a bit all over the place so forgive me if this appears a bit disjointed. :hehe:

First of all I have to say that I feel things have taken a downturn greatly over the last couple of weeks. The muscle pain is all over and constant and the fatigue is killing me. For the first time yesterday I broke down as I just couldn't take it any more. The Naproxen isn't cutting it and I feel I need pain relief instead.

On to the appointment - I got to see the top man who is well published in SLE. Hubby came with me as I had got myself quite worked up about it which showed in my blood pressure! :eek:

The Consultant set the scene by saying that he would start from the top of my body and ask me related questions while working down, if I felt he'd missed anything then I could tell him once he'd finished.....I'm liking him already. He was extremely thorough and I knew the questions he asked were to find out if I had symptoms of CNS or Nephritis etc.

We discussed the MMF (Cellcept) drug trial at St. Thomas in great detail and he said that he would not stand in my way if I wanted to try it again even just for a few months to stabilise me! I was utterly gobsmacked as in my head I was willing to accept a short dose of Pred and hopeful that he'd consider the Cellcept in the future. He suprised me by saying he wouldn't consider Pred as I'm young, it would bloat me and long term wouldn't be a good idea.

The only concern he had with the Cellcept was if we wanted to have a family and we discussed our reasons for chosing not to have children. He wanted to make sure it wasn't because of the Lupus and offered us a huge amount of support if we were considering it. By now he's scoring big points with me. :lol:

Hubby asked the doctor questions about the side effects of the Cellcept which I answered and the doc just nodded and said 'Yup, she's right'. I must learn to think before I speak but it was funny. :rolleyes: I almost lost it :tears: when Hubby said 'the person sitting in front of you is not the person I knew 6 months ago that was active, positive, healthy and happy'. Bless him :kiss:

So the upshot is that he wrote a letter to my GP to start me on 500mg of Cellcept when I'm ready and to monitor my bloods. He suggested we go away and talk about it a bit more. I've also got a script for Co-codamol and will stop the Naproxen.

I felt the appointment was very relaxed and the main thing is that he listened! All in all we were in for 40 minutes and I go back in June. His belief is that if a patient is well informed and takes a certain amount of responsibility for their condition then it can be managed better as they get to know how their body is reacting. By now I want to marry him. :rotfl: He also mentioned a few websites (Lupus Foundation of America and Lupus UK) and support groups like this one.

There are 2 things that are significant to me:

1. Although it is likely I had the MMF during the St. Thomas we still don't know for sure but he's willing to give it a shot.

2. Normally Cellcept is for patients with kidney involvement but he was still willing to try it. The alternative he mentioned was Azathioprine.

I'm nervous and happy (and sore) all at the same time. What have I got to lose? Thanks for reading - I didn't mean it to be so long. :)

Hugz, :grhug:

Pam xxx
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Hi Pam,

Wow! You had such a good appointment.
It is so great when you find a doctor like the one you had.:)

I hope you get better pain relief from the new med.:hug:

Good luck with the CellCept.


That sounds wonderful. I almost want to marry him too, but I'm already married... *laughs*

I hope you start feeling better soon!
It sounds to me as though congratulations are in order. Congratulations!
wow! i am so happy for you loopyloo. its always good to feel just like you decribed when going to the doctor. good luck with your new med. if you decide to take it.:) :)
Jeez, can I have him toooo :lol:

Will he come to Belgium from time to time??!!

No, actually I'm really lucky with my docs here. They're just a bit slow on the trying different treatment side but otherwise great at listening etc.

Congrats! Hope you feel better soon!
X T X:)
Hi Pam

Thats a wonderful appointment:) Im so pleased for you because I know you were nervous about this clinic and what it meant for you.

Sounds like you have a few decisions to make and I wish you the very best in making them. Let us know if you decide to try the MMF or Aza.

Hope you start to feel better real soon :hug:

Luv n stuff
I am glad that you had such a good appointment and that your hubby went with you. I am glad that they are changing your med and hope that you do find some pain relief now.

You are well educated so I am sure that whatever your decision be, it will be the right one.

I will keep you in my prayers that your decision and the route you choose will help push this back into remission.

Wishing you well....

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Hi Pam what great news that is glad you got all your questions answerd i do hope that you get a bit better when the meds kick in best wishes to you and hubby elisabeth:)
hooray Pam sounds like a result.

Very best of luck.
I do want him as my dr. Geez he is great. Tell him he is needed in California:lol:
I know you will do the right thing and having the support of your hubby is fantastic.

I hope your pain med works and you can start to have some relief.:hug:

At least you know that the Cellcept has worked for your in the past(we think right?)
Let us know what you decide okay?


That is great news! A good Dr is hard to find, always try to schedule your appointments with him, if he is in a group it may mean waiting a little longer but I am sure you can see it is well woth the wait!

I am on CellCept and I didn't have kidney involvement (i do have mild now, but completely under control and no scarring). My dr went there as I was not responding or had too many side effects from the other normal treatments.

I am 47 and take 1000 mg of cellcept a day plus 5 mg of prendisone - to keep kidneys stable. I am starting to have some breakthrough pain so we are considering trying enbrel.

I am so glad you visit went well, I hope you tolerate the MMF well and see some improvement, it took me about 5 weeks and to be on 1000mg to see results.

Thank you all so very much for your replies, I truly appreciate it. :grouphug2:

I've been so worried that I've been getting worse as I've not had constant pain like this before.

Anyway, Hubby and I spent a long time talking about it - I showed him the side effects on the internet but we also looked at some of the many studies where the findings were that it could reduce the amount and severity of lupus flares dramatically. The Mayo Clinic in particular did a study last year.

We weighed up all my options at the moment and hubby agreed it is probably the best one and he is happy that I will be closely monitored. I have to admit if he had said he didn't want me to do it then I wouldn't have gone ahead.

I see my GP on Monday morning and should start on 500mg of MMF (Cellcept) a day - this is a really low dose and hopefully enough to get me back on the straight and narrow with minimal side effects. Hubby is going away to Holland the same day on a business trip so he is a little worried. He's been a bit 'clingy' with me since the appointment but I think it's because he had a better insight into my world. I'm happy to go to all my appointments myself and I do keep him very much informed but I'm not needy with him. I'm quite sure at the weekend we'll be back to 'Loopy (as he calls me) for god's sake why did you leave that there or where is my shirt or have you moved my thingy or YOUR dog has been sick' LOL! :rotfl:

I couldn't do any of this without you guys. :highfive: :thanx:

Hugz, :love:

Pam xxx
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I am thrilled to read your post! You have a very good dr, indeed! I hope you respond to the Cell Cept, and that it helps you as much as it has helped me..:)

Your hubby sounds very supportive also! I am so happy for you..:)

I will be waiting for an update on how your doing..So glad your dr, is a compassionate dr, as well. The pain relievers should help you a lot as well..

Best Wishes, As Always..
Hi just a wee note hope things go well. Sarah my daughter is on cellcept for her lupus she started at 250 for 3 days, then 500 for 3 days then 750 for 2 days. Rheum wants her to get to 1000 mg. She is having allot of nausea with this drug. They say it gets better Hopefully you will have great results.

Hi Pam

I really, really hope you get some forward movement with the new medication.

The chap sounds great, but his behaviour also says a lot about how you must have appeared to him.

Take good care. I use Cocodamol (and sometimes Voltarol), by the way, and whilst it does not always give me complete pain relief, it is extremely useful - better for me than anything else i have been prescribed because i do not get any side effects from Cocodamol. (The Voltarol is a very different matter!)

Take really good care.

Thanks again for the replies. :grhug:

I saw my GP first thing this morning who was very pleased with the appointment at the hospital. His only concern is that my white cell count is 4.5 so we have to hope it doesn't come down much more.

It's so weird that my bloods are so perfect yet I have so much pain. On Saturday it felt like I'd torn the muscles in both shoulders. Nothing at all would relieve it.

Anyway, I started the Cellcept today. I got the dose wrong it's actually 1000mg a day. I had a little nausea this morning but nothing too extreme.

Hubby is away so I'm in bed with my electric blanket on, cup of peppermint tea, pooch lying next to me and of course you guys :) BLISS!

Fingers crossed!
Oh Pam

Please let me know how you get on your post is so comforting to me:)

Like you things have taken a downturn for me since Christmas. :( With constant muscle pain all over, tenderness and fatigue yet bloods are ok. I’ve been time I breaking down (a lot!) as I can’t take it and am worried. My consultant has just suggested Azathioprine for me which scares me abit-partly because I’m having difficulty accepting it may have come to immunosuppressants so please let me know how you are doing-well I hope
Thank you
Love Rachel
Hi pam

I wish you lot's of luck with the cellcept :luck: I hope it helps very soon.

It's very worrying starting a new med,I had the same concerns when I started azathioprine last year.thankfully I had minimal side effects so I hope the same will apply to you!..well none would be more preferable :wink2:

I am glad to hear you are taking care of yourself pam,but remember to let hubby take over when he's back :)

fingers crossed your white cell count does not go any lower & I'm glad you are receiving such good care..please keep us updated
take good care :hug: karen x
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