How much better can you expect to feel?

[Saesae]

Hi All.

I was originally diagnosed Nov 2017 under a private consultant. And the had first NHS rheumatologist appointment yesterday. Originally started on Hydroxichloriquine with little effect. Short course steroids beginning of Feb2018 and started Sulphasalazine and Naproxen. Rheumatologist has now added Methotrexate.

I suppose my question is How much better can I expect to feel?

Over Christmas last year I would have said my pain was a 10. Following the 4 months of sulphasalazine, and as long as I stay on the naproxen would probably rate my pain as a 4-5.

Can I expect to get back to normal??????

Or am I expecting too much?????

Is it just a case of I have got used to the pain, my hands and wrist have lost all there strength, and I still have a good deal of stiffness in the morning however it does seem to lessen quicker, more like an hour or two depending on how good a day it's been.

It would be great to hear other people's experience with the medication and hopefully the lessening ( if not disappearance) of symptoms and pain.

Yours hopefully

Sarah

[AgedCrone]

Hi Sarah......To be perfectly honest your question is like asking " how long is a piece of string?"

Some people react really well to their drug regime & possibly get back to 90% pre RA....some very quickly, but others don't find a successful set of meds for years.

You sound as if you are going in the right direction .....feeling improvement in 7 months is a very good sign...I think it was about 2 years (20 years ago) before I was back to near normal on a drug regime that suited me.

I'm now settled ( I hope) on Retuximab......for how long? Who knows, but I have always lived from day to day & expect to feel well.....until I don't!

So be upbeat & optimistic, & listen to your rheumatology team, they really are the key to your well being.

[hawker955 in reply to AgedCrone]

Wow, that is a long time. I responded to Humira within weeks. A silver bullet as I've described it before. My poor old grandmother had RA from her twenties until her death at an age of about 86. A whole life spent on paracetamol and NSAIDs. Way, way, before biologicals were available. I now sympathise far more than I did years ago, now that I appreciate a bit better what she endured!

[AgedCrone in reply to hawker955]

No I think you misunderstood...... I had various Dmards that I felt very well on....I didn't wait 20 years to get any relief!

I was on Mtx very successfully for seven years & hardly needed to see my rheumatologist...but as they say all good things come to an end,& you move on to the next regimen of drugs.

I certainly think I have been lucky having only had two rheumatologists since 1999, & both have favoured only one drug at a time & I was lucky enough that Prednisolone didn't suit me at all...so I haven't had to try to be weaned off it.

It hasn't been a walk in the park, but from what I read here,I am one of the more fortunate folk who haven't developed any other AI disease & have only needed surgery on feet neuromas & one carpal tunnel reduction....neither of which were a big deal.

That said I really wish I had never even heard of RA, but like most I just deal with it as it comes...& get on with my life...just the same as my RA free friends - not much else to be done really.

[patricia1193]

Hi Sarah.With RA there are no certainties just a lot of trying combinations of drugs and waiting.No two people respond the same .Really sorry to hear that you still have a fair bit of pain and I hope that settles more for you.I was diagnosed in December 2015 and started on Methotrexate Hydroxychloroquine and steroids.The steroids kept me mobile and the pain controlled but after 6 months the treatment had failed and I was put on a health service waiting list for RoActemra.Had infusions for 3 months and things improved greatly. Managed to get off the steroids after a year and just take it day by day.I have retired as work was killing me .I was a nurse and could not use my hands .I hope you have a good Consultant and GP as you need lifeline.I also had private insurance and it made a massive difference to the care.I changed my health centre as GP not great .The one I am with now is better.Take care and do not be afraid to go back to the Consultant if you are struggling.

[hawker955]

I found that all of the swellings disappeared and the pain is much, much reduced. At worst my hands and fingers ache a lot depending on how much I use them Even long walks holding a stick leads to an aching had. Luckily, few other joints are affected. My toes, now and again but not enough to affect my life generally. The toes after walking as well.

[oldtimer]

Mine comes and goes - when it goes I feel almost back to normal just unable to do some things because of the permanent damage to my joints. But they (we) haven't managed to control things well enough so that I am always OK.

[popsmith1874]

I think the hands and feet are a big issue with this disease but persevere as things will get better just give it a bit of time xxx

[Hopeful1]

Hi Saesae Still quite early days for you and but sounds like you have a pro-active consultant. My journey started in 2013 and I have been slowly through your list with very good periods pain free periods for long stretches till next drug had to be tried. Everyone responds differently to the medications and most take a few months to begin to get into the system. We both have all the biologics/ biosimilars to look forward to if current regime is not the one. Keep hopeful!

[dbestdeb]

I have gotten to a point where the pain is pretty well controlled as long as I don’t try to walk too far or stay on my feet too long. After various drugs since 2013, I was put on Enbrel and the pain improved and the fatigue a bit too. But to me, normal would include activity, so I guess the answer is no, I haven’t achieved normal and I’m not sure it’s possible.

[janmary]

Your question is one I often ask myself - most days I'm pretty ok , though have I just adapted to a new 'normal?' - I don't even know. there are things I have to be careful doing -gardening, ironing, drawing, sewing, knitting, picking up grandchildren - but perhaps I would anyway because of ageing and O/A. So I do as much as I can on 'normal' days, and accept that some days I'll feel whacked and sometimes things will 'blow up' (not very often, thankfully)

But I do more and (I hope) moan less than a lot of people my age who haven't got RA, so I count my blessings, as my Mum would always say.

I think there's still so much not known about RA and other AI's , perhaps the next few years will shed light

[helixhelix]

Like Janmary I do wonder sometimes how much is RA and how much is age. I've never been 61 before so no idea how that feels.....

What I do know is that when I was diagnosed I was virtually housebound. Both knees like ballons, unable to hold anything, hands and feet hugely painful so even small daily tasks were an effort. And completely shattered all the time. I didn't think I could get back to normal. Took quite a while to find the balance of drugs, and then to build up strength again, but for the last 5 years I've been about 95% normal I would say most of the time. I have to watch that I don't get overtired, and be careful about not doing the same movement for too long. But otherwise normal pain level is maybe average of 1 to 2, and generally just achiness rather than ouchy pain.

So don't give up hope, and keep your expectations high until your rheumatologist says there's nothing more that can be done.

[medway-lady]

I live a normal life do all the usual stuff and just get an occassion flare and thats not more than twice a year and passes quickly. So I have no real issues RA just means taking LEF every day and the twice a year trip to clinic not much more.

[cheshcat]

I'm rounding on a year and am worse then I was last year. I'm hoping to be moved up the ladder of meds at my next appointment but I have other problems going on and need my neurologist to release me for the medication.

It can really get you down, the grind of pain and not feeling well. I just went on a 20mg prednisone taper this week, I couldn't take it anymore.

I've greatly lowered my expectations. I'm hoping in the next year to get the RA under control to the point I can be at maybe 75%? My Mom has had RA for over 30 years. She feels 75% is a pretty good goal and about what she got back to with medications on her best years (she still ended up disabled but meds kept it at bay a long time, her feet and hands are severely deformed and she's had a total surgery from damage).