Hello I'm a Newbie: Hi All, Long post alert. This... - LUPUS UK

LUPUS UK

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Hello I'm a Newbie

slaithwaite
slaithwaite

Hi All,

Long post alert.

This is my first foray on this site so let me give you a little background.

I was diagnosed with Sjogrens Syndrome just after my first child, in 2008. My symptoms slowly got worse and I deteriorated in health. After a long time with little help from my Rhumy at that time (who made me feel I was on a Ro Ro ferry), i was finally passed to a different consultant (who has now left!), but only because there were issues with staffing! We went thrpugh all my symptoms and my blood work and she thought I had Lupus and sent me for a battery of tests, including a Lung Function test. The last one was 3 years previously and had come back fine. I'd said I i was feeling generally worse with off and on tightness in my chest and a cough, so she was covering all bases. The test came back saying I wasn't absorbing enough oxygen so was sent for a CT scan. That came back with nodules and possible Bronchiestasis about 6 months ago.

I was then sent to see a Respiratory consultant. We went through symptoms e.g. breathless (I just though I was unfit), productive cough, malingering chest infections etc... She said she thought the Bronchiestasis was linked to my Sjogrens/Lupus, she gave me a leaflet and we talked about what to do if I thought I had a chest infection- all in all a positive experience. She also said she'd write to my Rhumy.

I then got another new Rhumy and we started all over again, symptoms and blood work. I must point out i requested a different Rhumy, as I wouldn't got back to the one (who had made me feel I was on a Ro Ro ferry) and the other had left. He, then diagnosed Lupus no possibly or it's and buts.... which was probably a month ago. I wasn't as shocked as I thought I'd be, as I'd had a heads up that it probably was, so I did some research.

I'm currently on Hydroxychloroquine and on and off tapering Prednisone. My last Rhumy mentioned probably putting me on Methotrexate, after speaking with Respiratory Medicine. He was however cagey about what it was and why he needed to speak to Respiratory Medicine.

So, I have another nurse appointment in Sept, a Lung Function test next week and now a request to book an appointment for Respiratory Medicine, which I'm not sure why. Is it for the Methotrexate or just a follow up? I'm not complaining but that's a lot of appointments - makes one wonder if there's a concern somewhere.... especially after I've had a mixed experience over the last 7 years....!

9 Replies
oldestnewest

Welcome slaithwaite,

We can only guess at the answer to your question, but I don't think it is all that unusual for rheumys and respirologists to share the care of a patient when there is both a systemic auto-immune condition and significant lung involvement. My main complaint at diagnosis was Interstitial Lung Disease and at that time I was seen and assessed by both a resp and a rheumy, who hold joint team meetings to discuss patients with these kinds of overlaps. In my case, one decision they shared was on what would be a suitable steroid dose (my rheumy said that typically respirology tended to prescribe more aggressively than he would normally do, so he wanted to be sure that he wasn't under-dosing from the lung point of view).

Since you've had these recent changes in care, perhaps they are just pulling everything together to agree a mutually appropriate treatment plan? It might be that once this is determined, one specialty will sit back and allow the other to take a lead? x

Thanks whisper it- that makes sense. Feels a little full on at the moment 😊.

Whatever you do Slaithwaite keep away from Prednisone as taking this medication can cause Avascular Necrosis. I was given this for an overactive thyroid gland problem and 10 years later I was diagnosed with AVN and had both my hip bones replaced in 1997 and 1998 respectively.

Lisalou19
Lisalou19 in reply to ripon1756

My dad just had both hips replaced. His certain his rheumatoid arthritis caused the joint to ware away, I disagree . He was on prednisone for years!!!!

Now unfortunately I’m having to do the same, as it’s all the doctors will give me a the moment . I can’t cope with my symptoms, I’m pretty desperate. I do take vitamin d and calcium every day. I don’t want to be on these long term 😔

whisperit
whisperit in reply to Lisalou19

None of us do! I'm going to tag PMRpro here min case she has anything to add x

Wow - thanks for the advice. I'll be bring this up with the Rhumy nurse and see of I can get off it.....!

I think that if you need prednisolone then you absolutely must have it. It’s a wonder drug for many but, because of it’s side effects, it commands respect.

I don’t know what to say about your pulmonary issues but I do know that methotrexate will not be prescribed if there are lung concerns that could be worsened by it. There are more ‘lung friendly’ DMARDS that you can take. It can often take many years of PFT’s until they get the full picture of what is going on but I think it’s very thorough of your new rheumy to get it all checked out. I’ve been having 6 monthly PFT’s since 2012 which have now given way to spirometry only for monitoring. Keep us posted! Xx

Lisalou19
Lisalou19 in reply to Fennella02

I try to convince myself I will be ok. So I stop taking them and it’s a down wards spiral.

I always try to convince myself I’m well . Every now and then it hits me full pelt that I’m not. I can’t quite get the steroid dosage right, doctor says as needed. But as soon as I stop it resurfaces . It’s like putting a plaster on and taking it off before healed.

Lisalou19 that sounds like me. Take them away and I deteriorated.

Thanks for your response clareb67. I've been on meds for years and I'm only really stsrtingnto understand them more now.

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