What is the best we can hope for?

[Ruby_sommer]

On the too few occasions when I get steroid relief plus waiting and hoping for methortrexate to kick in.swelling goes down and the pain is much less,therefore I can cope better.however the continual ache and weakness in hands and wrists never goes away.is it always going to be like this.is normal only a dream?

[Leonwp]

Im afraid for some of us you have just hit the nail on the head.

[farm123]

Unfortunately it can be a long process to get to a level of treatment that will control the disease as nobody wants to take more powerful drugs than necessary and they all take time to work. Many people do find that they can then lead normal lives once they find the right medication. For other such as many on this forum which represents only a very small proportion of RD sufferers normal is a dream but that is for a variety of reasons and many have suffered for many years without the current meds. Also remember that this is very individual disease and everybody is different. Farm

[oldtimer]

The answer is - it varies!!

Some of us have great control on medication, for others of us the medication has never controlled it completely. Others, the disease has already done damage before the disease was under control and permanent damage has been done. Then we have to suffer the results of the damage even if the disease is under control.

[PFKAAde]

Hi Ruby_sommer

As others have said, it varies from person to person and from time to time.

That said, the answer to the question 'what is the best we can hope for' is total remission. It is possible, I have had fairly aggressive RD in the past and have been through pretty much all of the current crop of DMARDS, without much luck.

However since being on Humira I have been quite well controlled. As I sit here typing this I am pain free. The swelling in my fingers has completely gone (so much so that I need to go and get my wedding ring resized after 15 years of marriage) and the only visible inflammation I have is a little in my left wrist and a tiny amount in my right and right knee (the left knee is a TKR).

My hands and wrists aren't perfect and they do give me a little pain / discomfort, but easily managed.

I have plenty of other pain to cope with, but it isn't from RD (apart possibly from the collapsed arch in my foot which makes walking rather tender).

I recently stopped taking NSAIDs - Diclofenac in my case, and have managed without too much pain I am using turmeric phytosone / pipperine / curcumin as an anti inflammatory, not sure yet how effective it is but it seems to help.

I don't know how long it will last, and I'm realistic enough to know this might not last forever, but it is possible.

Keep up the hope.

Ade

[nomoreheels]

A few years ago I would have said drug induced remission & for a fortunate few complete remission but nowadays not so much but I think it's a valid point. The disease can turn & switch quickly so in my experience would be very much dependent on the care we receive, the Rheumy & also speedy diagnosis & treatment. I've been very well, in drug induced remission even but at the time I was being seen on a 3 monthly basis by just the one Consultant & any issues addressed & meds amended comparatively quickly. I didn't need to see my GP for any RD related issues because I was so well. My current Rheumy I only see annually & a Registrar or locum at 6 months & Rheumy nurse as necessary. This I think has been detrimental as not being treated by just the one professional has meant this last 3 years I've struggled to get back to what I've known previously as normal. It's understandable because the 7 or so different medical professionals I've seen won't all sing from the same hymn sheet unlike being treated by the one more on a more regular basis & who knows your history, drug reactions, ow joints have changed from one appointment to the next etc.

Are you just on MTX Ruby? If so it may be worth asking if you could be prescribed an NSAID &/or pain relief to work alongside on the problems you have currently. Another consideration could be that your dose isn't sufficient if you continue to have inflammation, or you need another DMARD adding. Have you been on MTX since diagnosis? Just with you saying you're waiting for it to kick in & if you've been taking it 9 months & still waiting has your Rheumy not discussed options or adding something else? For the last 3 years I've been kept on low dose steroids for the first time since diagnosis in 2008 & whilst it generally keeps my inflammation at bay (not so much recently) I'd rather they were used as my previous Consultants did & prescribe a month's course at a time & only if necessary. As it is my Rheumy has made them a part of my treatment, not ideal being osteoporotic/borderline for osteoporosis! A big difference I feel is I was always treated as a whole previously & not just determined how controlled I am from blood tests because, & I don't think I'm unusual in this but even though I have inflammation it's not always reflected in my bloods. Refreshingly the SpR I saw last didn't do my DAS 28 because he said my score wouldn't have necessitated adding another DMARD, proof if it were needed.

Sorry, this has turned into a bit of a rant, not my intention but your question reflects mine to some degree. You could also ask if strengthening exercises could help your weak hands & wrists. I have the same problem & it helps a little, though mine is considered solely due to OA not RD.

You may find this link of interest nras.org.uk/-what-does-remi... or even add what it'd mean to you here remission.nras.org.uk. I hope you'll get there & enjoy being RD free.

[Ruby_sommer]

2 weeks ago I was in such a desperate state I rang rheumy nurse and told her my issues also I was having bloods taken later that day.following day after bloods were in I was offered an appt.with consultant for three days later.my crp. Was 119this I only found out a week later when my bloods card was returned to me,consultant upped methertrexate inj. to15 plus immediate steroid inj. Plus oral sreoids at 7.5 daily. Sent for quantiferon blood test plus add on blood tests at my next bloods appt. this she said was for possible biologics if this treatment doesn' work. Swelling of hands gone down can now get myself out of bed, 12days on ,feet not quite there. Feeling a whole lot better,forgot to mention 10 weeks in on methertrexate,so I know I,ve a way to go. When things are bearable it,s easy to forget that it,s there lurking,I,ve been there before! Here,s hoping,like I,ve been doing for so long,will I ever get there and go to bed knowing for sure when I wake up I can get up reasonably mobile!,.............best wishes to all..

[Ruby_sommer]

Thankyou Kai,so apt.reduced me to tears,but happy ones🙏

[Newjobnewlife]

I know everyone is different and gain different levels of disease control but here's my story(briefly)-it has taken nearly four months for methotrexate and sulphazalazine to start to make a difference for me.

I'm on high doses of both now with reducing steroids and depo me drone occasionally and I really didn't think that I could cope with painful swollen and stiff hands feet wrists etc for much longer.Rheumatoid has been taking over all my head space and it felt like I was locked in a fog that left hardly any time for my children family or job.

Then I fell and damaged my knee and shoulder quite badly and thought "well -how am I going to get past this?"Endless visits to trauma clinics, physio plus rheumatology which I found exhausting as we all know!

BUT as I mentioned in my post yesterday-things have started to improve-as my RA team said they would-today I actually managed to wear a ring on my finger for the first time in months and my fingers are starting to belong to me again-I actually recognise them and can almost make a fist

I guess I just want to offer you hope (as I had almost given up hoping)

Please take care 🌻

[summer32]

I have got my old profile back. I managed18 months remission