Rheumatoid appointment

[Lisas_tired]

Further to my recents posts regarding Ana results... lupus or not!! I finally had my appointment after 9 months... has some bloods taken to see if there was any change, awaiting them.

Spoke to the consultants junior who was very good but did tell me she was on an 8 minute schedule 🤔🤔 went through symptoms & pictures of rash etc... she said if sounds exactly like Lupus.

Went in to see the consultant & I almost felt like because I don’t ‘look’ ill & my joints are not inflamed to the point where you can see swelling, he seemed to think ‘I am managing everything really well’ I feel a bit gutted!!!!

I may look healthy but it was 3pm... he needs to see me through the night & 1st in the morning & how bad my flares up have been for weeks on end where I literally feel like shit!!

I enjoy the gym & yoga everyday, I said it had stopped me from these as my fatigue/muscle weakness gets so bad, he told me to go do cardiovascular exercises 🤦🏼‍♀️🤦🏼‍♀️

I told him my T3/T4 are on the low level & he said this is absolutely fine, I said I assumed I’m using all my energy stores & would surely would be more pressure on my body, he said if that was the case my Tsh would be high (which it’s not) I’ve been told previously to listen to my body & rest when fatigued!!

Basically he wants to see me in 6months to see how I go.... I understand where he’s coming from but to me it feels like 6 more months of shitty symptoms..... 🤷🏼‍♀️ even if did have a diagnosis, I’m sure I would still be feeling the same, he was exactly excited about the medication for it either Hydro.. something.. (can’t remember) is there any point me starting them??

[whisperit]

Hello Lisas_tired,

I'm not sure what you are saying in the last sentences? I think you said several months ago that you had been prescribed hydroxychloroquine (HCQ) but had not started taking it? So was this consultant reiterating the advice to start on HCQ?

As you probably know, HCQ is the usual drug for a range of systemic auto-immune conditions; I imagine that most people with a diagnosis on this forum are, or have been, on it. One might expect it to bring down your ANA and to have some impact on your symptoms of fatigue and joint pain. It does take a few months to kick in though x

[Lisas_tired in reply to whisperit]

Oh sorry just re-read over it 🤦🏼‍♀️ when my Ana was high back in feb, I basically had an answer machine message telling me to pick up a prescription to start taking these, I did for a short while (maybe 4+wks) didn’t think there was a change & hated the taste & stopped taking them.... it was only whilst I was here did I actually know what they were for.

I explained this to the consultant & I meant, he wasn’t exactly excited about me taking them (I’m not keen on re starting them due to side effects) he said it wouldn’t stop fatigue/tiredness/rash etc which I find worse than the aches & pains at the moment!!!

So I’m thinking, if my results do come back & he believes lupus, is it at all possible to just manage it whilst I can without these tablets 🤷🏼‍♀️

[Shorthouse in reply to Lisas_tired]

I don’t take hydroxy.drugs don’t suit me at all.so l plod on with out lupus drugs!!!!

[Lisas_tired in reply to Shorthouse]

How do you feel without anything??? I’ve read a few people saying it doesn’t agree them, I guess that’s one of the reasons I didn’t want to start in case it kicked in & I felt worse!!!

[whisperit in reply to Lisas_tired]

Thanks. HCQ takes 12 weeks or more to work, so it's not surprising you felt no benefit after a month or so. And yes, it tastes very bitter. Normally, it is said to improve skin symptoms, as well as the underlying immune dysregulation, and some sources (including the LupusUK leaflet) say it also helps with fatigue. But obviously, your consultant will have given you advice based on his expertise and understanding of your particular clinical picture.

As to whether you can manage without HCQ, that's not a question I can answer! Obviously, we all have that choice and I guess it's about being as fully informed as possible before making a decision. As louise-a points out, some people cannot tolerate HCQ anyway, so have to pursue other options. There are lots of other DMARDs as well as the almost universal steroid meds. And some people choose to avoid all meds (I don't know any though). Hope you get the results you need x

[Lisas_tired in reply to whisperit]

Thank you, I’m sure when it gets to the point when I really feel I need meds then no doubt I will. I think I had come out of a flare up when I started them so felt better & just stopped taking them but reading your comments & other people with experience, it definately makes me consider it.

Not that I don’t trust the consultant, I just take people who used them 1st hand than just his knowledge & opinions maybe.. maybe it’s worth trying them out to see if maybe it’s stops flare up & other symptoms!! Thankyou again x

[Lisas_tired]

There’s just so much different advice out there and from doctors 🤦🏼‍♀️ I guess I will tell how my body reacts to the medication if I do start it but that makes me feel better already what you have said!! So my doctor says it won’t touch fatigue & yours says it does... and Thankyou for responding xxxx

[Fennella02]

I managed for years without Hydroxychloroquine - about 15 or so! But they do prefer intervention to halt disease progression. Positive response also adds weight to the auto-immune argument.

[Lupiknits in reply to Fennella02]

I was started on hydroxy straightaway, together with an NSAID. The hydroxy I started and got over the scratchy skin and slight stomach upset of the first week. The NSAID I ignored because the consultant overlooked my gastric problems.

I counted down the days to the magic 3 months I was told it would take. Felt no difference, so counted another 3 months. In an irrational huff ( I vanished in the system) I stopped. Two months later I restarted because it was working, and I felt the difference. The difference was subtle, but there. I've continued ever since.

Yes, they taste dreadful but that makes sure no child or animal will take them. I screw up my eyes, crunch and swallow, then have a sweetie to cover the taste.