Now starting on Hydroxy....: After my experience with... - NRAS

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Now starting on Hydroxy....

TheBoys profile image
21 Replies

After my experience with Sulfa, am just starting on Hydroxy... so will see how that goes.

My Rheumy wants me on Methotrexate but can start until my lung CT scan. Any sign of side effects am to stop the hydroxy immediately. Thankfully all i have at the moment is a recurrence of my baker cyst in the knee..so that's swollen like a balloon making it look as if am.wearing skinny jeans albeit on one leg..

So, i ll see how this goes.

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TheBoys profile image
TheBoys
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21 Replies
wishbone profile image
wishbone

Not as effective as other meds I've had. It never really controlled my RA but it did help me through a rough couple of years. It does appear to work well for some people. Recently stopped taking it due to stomach issues.

Is there something wrong with your lungs? I'm not being nosey, but I have a lung condition and hydroxy didn't seem to affect it in any way if that's a concern.

TheBoys profile image
TheBoys in reply towishbone

Hi.. thanks for that.

About 3 years ago I picked up pneumonia and got sepsis. Ended up in hospital. Since then, I seem to have a lot of respiratory complaints in winter. Just before xmas i had a bad infection and it appeared that I had a partial collapse in the lower left lung. My rheumatologist is reluctant to start me on Methotrexate until I have a lung scan...just waiting on that at the moment. In all honesty apart from my knee, all is ok just now.

Paul

wishbone profile image
wishbone in reply toTheBoys

Thought there might be a problem with your lungs as you are having CT scan instead of the usual pre-methotrexate X-ray. Good that your rheumy is being extra careful giving you that CT scan. My chest consultant stopped me taking methotrexate soon after I developed a lung condition because it can cause lung problems of its own, which he said could make my particular lung disease difficult to monitor. Besides - who needs two lung conditions when one is plenty to get on with! :-O

I've had sepsis on two occasions, the first being the worst!...that was a barrel full of laughs I don't think!!! :-( Both originated from UTIs.

Hope your CT scan turns out ok.

TheBoys profile image
TheBoys in reply towishbone

Thanks for that 😀

wishbone profile image
wishbone in reply toTheBoys

Anytime! ;-)

nomoreheels profile image
nomoreheels

I'm glad your Rheumy has considered alternative treatment plans for you Paul. I also had a rubbish experience with SSZ, I was on double therapy with MTX. I took it too long, problems getting my Rheumy to ok it when she was on extended leave but when she did boy was I happy!

Anyway, if it helps, I started my RD journey treatment on HCQ & it worked well for a year then for whatever reason just stopped, that was when I started MTX. Again if it helps, I have a history of spontaneous pneumothoraces (lung collapses), also my left. Have been on MTX 10 years now with no lung issues. That said on the odd occasion I get a cold it usually affects my chest (guess lungs are my weak spot since collapses) so have been prescribed antibiotics. When I am I halt the MTX until I finish the course, as advised. I did have a more recent lower lung infection in my left, not thought to be related & relieved with diclofenac, now cleared.

I hope the CT scan is clear & allows you to start MTX, it can be a good med for many.

wishbone profile image
wishbone in reply tonomoreheels

Heelsy, my friend's daughter recently had a lung collapse. She's in her twenties and they told her it may happen again. Do you know what the cause is?

TheBoys profile image
TheBoys in reply towishbone

I think living in London with its often overlooked pollution doesnt help. When I go to the seaside especially to home in Ireland or to Spain...my lungs feel brand new in a couple of days.

It all got triggered from my pneumonia from late 2015... which arose from a period when i got very run down having worked for a period of 6 months with 1 day off....since then I get a couple of very bad chest infections each year... i came close to going into hospital last year with a bad infection. The collapse was probably down to my latest bad infection...it just sneaks up on me..the only clue being a gradual build up of mucus, and shortening of breath.

I got a dehumidifier from John Lewis for the bedroom...it realky helps .

wishbone profile image
wishbone in reply toTheBoys

The only thing the docs told her was that her weight may have something to do with it and advised her to put some on..she is quite thin. The only signs she had was pains in her back when she breathed, which she put down to muscular issues as most people would. At least she'll know to go straight to A&E if it happens again.

nomoreheels profile image
nomoreheels in reply towishbone

I was a size 10 or even 8 at time Wishy, Just one of those people who never put weight on whatever or how much I ate. So quite slim, even more so after the first hospital stay, I would think a size 6, certainly too thin. My wedding dress had to be taken in quite a bit, it was very fitted in the bodice, exaggerated my frame, reminded forever by my wedding pics.

Pains of a muscular type in the side of the back when breathing whichever side the lung has collapsed is spot on, not where I even considered could be lung related. It was only when I couldn't sit up for the pain I went to my GP. The journey back from the wedding the previous October was a good 3 hours lying on the rear seat on the painful side, the only relief I had from the pain. It subsided for the months til April, I would think it reinflated, then when the severe pain returned was obviously complete collapse again. Do share my story if it helps. PM if I can help further.

wishbone profile image
wishbone in reply tonomoreheels

My wife was a 10 when I married here and she was quite petite, so you must have been skinnier than Twiggy! :-)

If you were in hospital for two weeks then I'm probably way off the mark saying a day or two for her. I shall phone him later to find out and let him know about you.

nomoreheels profile image
nomoreheels in reply towishbone

My wedding dress was a 10 so like your wife was. Always looked taller than I am because of it.

When they operated the week after I was married I was in a further 2 weeks. Recovery was swift & I've never had one again. It is my weak spot though, colds tend to end up on my chest.

I wonder if your friend's daughter had a partial collapse & they're seeing if it will heal itself. Aside from pain which as I say varies from niggling like muscular pain to off the scale & only breathing shallowly because it hurts more otherwise, it is a weird feeling, as if water is sloshing about within your ribcage when you move. Don't remember why, or if they told me at all.

wishbone profile image
wishbone in reply tonomoreheels

Just come off the phone after speaking with my friend. He said his daughter's lung was fully collapsed and she was in hospital for just over a week. She is doing ok and has managed to put on half a stone in weight. :-) I told him about you and your offer to help. He said thanks and will let me know if it's needed.

Thanks heelsy :-)

nomoreheels profile image
nomoreheels in reply towishbone

What I didn't think of of course is that it's 34 years since my event! Ways of treating full collapse may be quite different nowadays, boy that makes feel my age. I'm so pleased she's doing ok. It really does knock the stuffing out of you so she will have needed to take it easy but hopefully she won't have a a relapse & that will be the last visit to hospital.

nomoreheels profile image
nomoreheels in reply towishbone

I was also in my twenties, 24, Mine was as diagnosed, spontaneous. My GP told me not to go home but to go straight to hospital, I thought it was just a chill. This was early April & I'd been at a wedding in the October & was stood outside a good while without a coat. They couldn't give a reason except to say primary spontaneous pneumothorax (PSP) was more usual in tall, thin, athletic young men. It did happen again a week & day after our wedding whilst I was bending over the bath washing my hair.

I'm sorry your friend's daughter has one Wishy. It can be very painful, particularly if it's a complete collapse.

wishbone profile image
wishbone in reply tonomoreheels

She went to the GP expecting to be told it was muscular, but as soon as soon as he examined her with a stethoscope he told her to go straight to hospital like your GP. I think she's fine now, but only after giving hospital staff a torrid time! She is not the most stoic of people apparently! :-)

nomoreheels profile image
nomoreheels in reply towishbone

So did she not need to stay in hospital?

wishbone profile image
wishbone in reply tonomoreheels

I think she stayed in for a day or two - I'll check and let you know.

nomoreheels profile image
nomoreheels in reply towishbone

I hope she's ok now & doesn't have a recurrence. I was in two weeks the first time, released a couple of days before my wedding, just enough time for my wedding dress to be taken in I'd lost so much weight (which I couldn't afford to lose!). I was in the same, two weeks, the second time it collapsed.

Sorry for hijacking your post Paul.

TheBoys profile image
TheBoys in reply tonomoreheels

Lol..no problem😀

Good luck, I hope it works for you😊

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