Update

Maturecheese

Hello all, I thought I'd post an update as I haven't been on here for a while.

I'm still on triple therapy Meth, Sulph and hydroxy but obviously it's not working as it should. Pain/inflammation has now spread to my wrists and thumbs and to a small degree my fingers and toes. I still have neck pain daily, tweeks in my knees and my right ankle is not behaving. My knees haven't swollen lately though and bizarrely the chest pain has now all but gone.

I am still getting fatigue and I would say that is worse. I was supposed to see the Doc last week but it was postponed until Aug 23rd which incidentally is better for me as I want to discuss him prescribing some pred as Wifey and I are going on an 8 day cruise in Sept and I would like to be active on my holiday. I still haven't gone onto Biologics yet and I suspect it would be better to wait until after the cruise to do so as infections can spread on ships.

I had an appointment with Urology last week and he wanted to CT scan my kidney as I have had a small kidney stone apparently but it hasn't given me any trouble (4mm when last scanned 20 months ago) He seems happy for me to pass that naturally, I assume by getting me to drink copious amounts of water although I am not doing so as I like a lot of tea. I asked him to hold off as I assumed my rheumatology appointment was going ahead the same week and I also assumed that I would be getting a full body scan before they put me on Biologics. Well as I pointed out that was postponed so it looks like i'll be going without for now. Why can't different departments co ordinate?

It would be just my luck that I will get a blockage or the like with my kidney stone and need urgent surgery whilst on Anti TNF's (biologics) and we all know the danger of infections in hospital.

Oh the joys of getting old and I'm only 55

dreamdaisy

Hello, long time no hear. I am sorry you are still in pain but for me that has always been the way of things so it doesn't surprise me. I did a triple therapy for years and just continued the slide downhill whereas others markedly slow the slide or even go a bit back up. You never know how things are going to be but I was always pretty sure that for me they wouldn't be good. So nice to be proved right.

I'm not sure if going onto biologics is no more risky infection-wise than that posed by the DMARDs. I rarely fall 'properly' ill, a fact I put down to hand hygiene and the other preventive measures I take. I hope you are able to enjoy the cruise, ensure you have enough anti-bac wipes for the entire ship's complement! DD

Maturecheese

Thanks for the reply DD. I just thought I'd vent off where I am to date. You are indeed an inspiration with your stoic attitude and I need to learn that. I am still miffed with it all to tell the truth as I am restricted in what I can do compared to before and being a busy person this is alien to me. Also miffed at my decline in fitness and shape but hey ho I'll get used to it eventually.

Anyhow toodle pip for now and i'll post when I have more info probably near the end of August.

dreamdaisy

Inspiration? Moi? Don't think so. I've had a lousy life health-wise and will continue to do so because nothing gets better or easier as one ages. You can't lose what you never had so this is much harder for you than it is for me. DD

trepolpen

is your CRP down to normal levels ? & are you still negitive for RF ?

you can become positive for rheumatiod factor , your CRP was very high , I had a result a few years ago with a infection in my hip of 240 but it stayed around 140 until they gave me steriods but it left me with alot of damage to my hips & knees & they need replacing

I hope they do get it back under control for you

Kitty

Just to confirm what trepolpen said about it being possible to become RF positive, it happened to me. Diagnosed as seronegative 32 years ago, after treatment for cancer in 2012 I became seropositive in 2014. With the added bonus (?) of developing Rheumatoid Vasculitis. :roll: After treatment with very high dose Pred for Vasculitis, I also became Ostoporotic with spinal fractures, and RA's second cousin once removed OA decided to take residence in my hips. :shock: Anyway, now on Leflunomide (for RA) low dose Pred (for Vasculitis) along with low dose MTX for Vasc and occasional Truxima infusions for same. also Zoledronate infusions for Osteoporosis, with Adcal D3. GP started me on Fentanyl patches and Morphine Sulphate for pain in hips and spine. I still take Paracetamol too. :?

Maturecheese

Re questions I cannot say for now as I am seeing Dr on 23rd Aug and they don't take CRP levels when they do my bloods (I know it's a bit daft and I have suggested that they do but I am told it needs to be requested by the Rheumey as the nurses can't just do it without authorisation) This is annoying as when I do see the Rheumey he generally gives me a CRP blood test after the consultation when surely it would make sense to do this with my periodic blood tests. I'm pretty sure it is still quite high as I am still getting a lot of fatigue.

stickywicket

All places are different but, after an operation requiring a long lay off of my meth, my rheumatologist told me to ask for my CRP levels checking next time I had my bloods done. I have them done at my local medical practice. I did and they did it without a murmur. Of course, the rheumatologist had requested it but they only had my word for that.

Maturecheese

Sticky It all depends where you are I suppose. My sister works in a surgery in England and is always telling me how much better the NHS is there compared to S Wales (No reflection on the staff) I guess it's down to resources and moral

stickywicket

I think you're right. I'm actually in the Scottish Borders. My brother lived near Swansea and I was not at all impressed with the ambulance service there when he was dying.

dreamdaisy

Whether it's true or not I don't know but Cornwall and Wales are supposed to have the poorest NHS services in the country. When I had to go to the local hospital when on holiday in Cornwall I found them superb but I think that's the NHS today: good in a crisis, hopeless with the every-day. DD

Jackie47

Hi. I’ve had an Depo Medrone steroid jab when things dip. Can’t tolerate steroids any other way because they send me 😜

Maturecheese

Haven't looked on here for quite a few days but I can agree with the steroid thing, I get quite 'wired' when I'm on them and more likely to snap at people which I have to try to resist.

Re appointments I have had an interesting time of late, 19th aug cancelled, rescheduled 23rd aug then cancelled, rescheduled 16th august cancelled and now 10th sept yet to be cancelled. How much do these bilingual letters cost? They have compromised and made me an appointment with the nurse for Aug 28th. Happy days.

dreamdaisy

From my reading on here of people's experiences with steroids I have learned they can also pep up emotions as well as the physical side. I have never been on a dose big enough to experience that aspect.

I have no idea how much bilingual letters cost - I suppose it's too complicated to enable people to state their language preference. As for appointments I try not to make any, I find that simplifies life no end and reduces stress: one of the bonuses of being 23 years in. DD

Jackie47

Know what you mean. They send me crazy. Had to be observed after a Retuximab infusion in hospital, I’ve been banned from any sort. I can tolerate the jab you had though.