Well saw my consultant took no pain killers no trying to look well in fact very scary to look at
But he saw me for just how bad i am.
Talked alot , I broke down in tears, he examined me
And he finally agreed that meds are not working. He's putting me forward for biological drugs but has put me on steroids in the interim as I'm so bad.
Feel relieved that something is getting done but also a little scared too.
I just need an end to this awful crippling pain.
Bloods done xrays done in readiness for drugs but he's keeping me on metho is that normal when going on these biological drugs? But he's taken me off sulphazalazine as he thinks they are upsetting my tummy , even though I said they don't effect me he said over long period of time they cause bad stomach. Guess I'll have to go with what he says .
Thanks for listening xxx
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Denise64
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Result! It's an awful thing that you have to be this poorly before you are heard but at least there is now a way forward. I really hope the steroids help ease things for you and that you get the biologic - whichever one he decides appropriate - can be given sooner rather than later. Hugs
That's great that you were properly listened to and examined.
It's a big decision going on to biologics, it took me a while to make it. And yes you stay on MTX. If you can they like you to stay on MTX alongside the biologic as it helps stop you building up immunity to the drug. I'm still on 20mg, but hoping I'll be able to reduce down in time.
Anyway, it took 10 weeks for the biologics to start working for me and now (week 13) things are really looking positive. Haven't taken a pain killer or anti-inflammatory in 10 days!
Glad to hear of your improvement Helix. I’m the same it took nearly 3 months for my biologic to work but now I’m feeling much better. Still on Mxt as well but only 12.5 mg fingers crossed. I used to take 1600 of Brufen every day, now I don’t need to, great!
That's amazing that you haven't taken any pain killers or anti infammotries! Yes I know it's a big thing going on them but as you n every one else knows you can't carry on like this in pain.
Just hope it goes through quickly and works quickly. Is it an injectable thing? He said I would have to manage it at home? He didn't say which one.
That’s good news and I hope the biologic won’t take too long to start. If you are ok with Mxt they keep you on it as it supports the bio. Best wishes x
It's brutal that it takes so long and we have to go through all the cheaper drugs first to see if they wil work. I came off steroids after 2 years and my levels went through the roof even though on mtx and Sulfa. Like you, that was the point they agreed biologics. I started Benepali this week but still take mtx and Sulfa. Back on steroids as was going away for three weeks and without them wouldn't have got there! Now taking just 2mg daily for a month when hopefully, biologics will have started to do their magic.
I hope life improves for you quickly. It does for many! My nurse from health at home has RA and she was in a wheelchair she was so poorly. She takes Benepali and now works full time, goes hill walking and just about to go on a world cruise. That gave me so much hope and hopefully, it will for you too.
I use CBD oil and paste from CBD Brothers. Much stronger than Holland and Barrett. I don't use it so much now since I've started to improve. Must be hard to work. I run a business and have a manager that does day to day stuff so I don't have to. I did 5 years of 7 day weeks 14 hours a day. Could have been that that brought on RA in the first place. Who knows!
Wow yeah it's hard working it's getting more difficult. Hope fully my steriods will kick in soon. God knows how you worked 7 days a week. So you say you used the oil do you think I can use them with the steriods n metho ? Xx
No option but to work. 100 plus clients and 5 staff that needed to pay their mortgage and it is my responsibility.
I use the oil and take mtx, sulfa and Benepali. Rheumy knows and haven't said I shouldn't. I also take vitamin D, Curcumin and black pepper, flax seeds and organic sulphur. I'm covering every base in hope 😃x
Hi, well done you for making the appointment in your raw state as I know it can be like hell without medication. MTX is the gold standard and excellent for many people and by far preferable to untreated RA as some people will avoid a lot of these meds and risk inflammation damaging not only their joints but internal organs - reality. If you ever needed to move up to one of the big boys MTX or similar would be a requirement before approval. Hope you get your change of med soon and you should notice a real difference - stay strong.
Brilliant news.. it is a shame how we have to fight every step to get the drugs we deserve to improve our quality of life. Positive thoughts coming your way and I really hope that you are prescribed something that helps. xxx
We wouldn't have to fight so much if we paid as and when needed direct from our pockets, the NHS can only stretch so far. Previous generations could only hope for what we have now in their lifetime.
I was put on Sulfasalizine late in 1996 about 6 months after my first scary flare up whilst I was on Night Shift. It took me 1 hour to inch my way down the entrance tunnel to the Data Centre I worked in. Rheumatology in Sheffield at that time was one of the most depressing places I’ve ever come across although I’m now told that they have since turned things round and it’s now a centre of excellence. I’ve shared before how my wife (who was a Geneticist and then IVF Research Scientist (she knows about all of these MAB drugs, cytokines etc as they were used in her research into Recurrent Miscarriages)) did all the hard work to get me transferred to Chapel Allerton in Leeds - a specialist in Rheumatology autoimmune diseases. They took one look at me and I was immediately put on to MTX and was advised to put in a serious complaint against Sheffield as they believe I should not have been kept on 1st line medications for so long and was the root cause of how it was now too late to save both ankle joints. Some of us who have been ‘doing the Rheumatology Rounds’ for some time will remember the earlier treatments - (a) Sulphasalizine - a direct connection to the Sulphur Spa treatments (b) Gold salts injections - small problem is that Gold eventually just ends up being stored in your body and is toxic (c) ditto for Mercury Salts injections.
Nearly all of the newer biologics treatments seem to work better when taken in conjunction with MTX (which you can now have as a weekly injection if you find the tablets nauseous) - I think MTX has such bad press because in much higher doses it’s one of the Chemotherapy drugs used for Cancer treatment. We take it to try and suppress our overactive immune systems.
When people ask me what’s the difference between RA and OA my stock answer is ‘OA is probably understated and described as ‘wear and tear’ whilst RA is an autoimmune disease. If I stand on a rusty nail in the garden my body’s white cells will, if they’re working correctly, will rush to the nail penetration site in my foot and start a clean and repair to stave off infection and start the healing process. What happens in RA (and I’m not a medic but a Pure Mathematician Blues Guitarist!) in me is that for no apparent reason (but I do have a number of possibilities as to what started my (and I can only speak about my RA, not your’s) RA off) my white cells one day seemed to think I’d had some sort of injury to both ankles and wrists (which it hadn’t) so my body sent out a whole army of white cells out towards my mainly ankle joints. When they got there instead of cleaning up any possible non existent injury they thought while we’re now here all this tasty cartilage looks like it needs treating and started to gobble it up. Once the cartilage has been destroyed I was then left with bone on bone contact - all the nerve cells then Shreek in horror causing the debilitating raw pain we all know so well. Still and as it was in the 40s the main treatment is to try and suppress our immune systems to stop this from happening and sometimes for a few patients the RA gets suspended and we get remission. Sorry if my ramblings are a bit ‘Janet & John book’ but I’ve found the explanation useful when I get the usual questions like ‘is it worse in cold weather?, does it raining make it worse?, are you better living in a hot climate?, I’ve heard cider vinegar helps?, I’ve heard spraying your joints with WD40 helps?, you need to go Gluten and dairy free etc.’
I don’t know if you ladies on the forum can vouch for this but I’ve been told in the past that during pregnancy a lot of woman go into remission from their RA (hopefully true as you can’t take the drugs we take during pregnancy).
Methotrexate only became the standard treatment during the 90's, so if you started out with a hospital/rheumatologist in the 90's who wasn't up to date then more likely to have been given other drugs. I just thank my lucky stars that I wasn't diagnosed in the early part of last century when there was v little treatment apart from slugs & aspirin and I'd probably be dead by now of heart or lung problems.
Hi - yes I have been pregnant 3 times and in total remission each time as though RA never existed. If only they could bottle whatever hormone that does this! Sarah xx
I asked the consultant about gut problems n RA as I have gut problems. He said there are lots of tests etc going on at the moment and a definate link but lots more research to go into this first. I read up on a leaky gut n RA.
He said in the future that will come out.
So there alot to be said about hormones and other things causing RA. Xx
Hi Denise was told to take a low dose of Mtx as it help with Biological drugs. Have been on Actemra for three weeks think I’m slightly better but wrist is still really bad hopefully this will improve. Good luck.
Don't really understand eather why he is keeping you on MTX. Has obiously not had the hoped effect and probably together with sulfa not making your GI problems better. Even if on injection MTX does have an effect on stomach. I would insist that your doctor explains why he thinks staying on MTX a good idea. Hope you feel better soon. Simba
Really pleased you may well be on a good path for get the best possible treatment for you. Yes often biologics are run with MXT. In my experience Consultant may well be right about Sulphaza.....
Ok thank you , I'm a bit confused now as to wether I should be on it or not as mixed reviews I'm going to ask my rhumy nurse about this Before I go on the biological drugs
Even though it is shown in studies that biologics+ mtx is more effective it does not however mean that it suits everyone. You have really had quite a long go at MTX and you only know how it effects your wellbeing.
MTX is used in conjunction with some Biologics because when your rheumatologist applies for funding NICE regulations state that it should be ......your Rheumy can get permission not to comply with this rule, but most prefer to go along with it. Seems to work out well for most people.
Ok thank you that's really helpful I guess I should of asked all this at the appointment but I was that upset n so busy as getting across how bad I've been and wanting to get a result e.g..change of meds that I then felt a bit rushed n totally forgot to ask the inns n outs of biological drugs. But he mentioned something about going to biological clinic and I guess it will take time to come through anyway .
It depends a lot on the area you are in & how quickly the health authority approve the funding. In the meantime you will need to have some tests & I think I had a chest X-ray.
Good luck with it. I have been on it for a couple of years & it has been very successful.
Yeah had bloods done xrays done back on steroids meanwhile to keep pain at bay Very annoying it's taken this long to recognise how bad i am n now having to go back on steroids. But hey ho I'm getting there now . But I'm defiantly going to query being on metho , thank you xx
Unfortunately it depends on when the committee meet to consider each application for funding. They just look at the rheumatologist's report, & see if the answers tick the right boxes. It's inhuman, but for now it's all there is....so don't feel it's a reflection on how bad you are feeling.
I think I waited about three months to get the funding, then I had to to get slotted in for the dates at the clinic.
But do take your rheumy's sdvice on the Mtx.....as I recall it is only about 2.5mg, & it could make the difference of it working for you or not.
Your rheumatology nurse will keep you informed & arrange the dates for you as soon as the funding comes through.
Just convince yourself it's going to work....if necessary with Mtx.
Hi Denise good news. I’ve only been on benepali alone for 8/9 weeks & was worried about bios but don’t know why as feel like old self in mental health/energy levels as well as no sickness (unlike MTX). Rheum talked about adding MTX back in in 3 months as makes benepali 15% more efficient ( me i’d rather feel normal & stuff the 15% 😉). Others have posted previously MTX stops body forming auto antibodies to benepali ?(search benepali, should come up). But I am happy just on one at mo’; told it takes up to 3 months for full effects 🤞wrists/hands still ache but no flares elsewhere. Only my experience to date but hope that’s a help, good luck xx
Yes that's very helpful thank you I'm going to look it up as I don't know what one I'm going to be put on yet me thinks even with his ASAP letter it's going to be a while before I get put on it. Does anyone know wether i should inform my work that I'm struggling n changing of drugs. I'm trying to fly below the radar n carry on as normal but they can see im struggling I'm terrified of loosing my job as I love it.x
All went through pretty quickly with me Denise, after tests and bio clinic appt, within a few weeks. If work already know you’ve got it then nothing to lose & at least they know why you’re struggling: they’re supposed to make reasonable allowances etc but up to you, good luck x
Sounds like your rheumatologist is on the ball, although it’s a shame it had to come to tears before anything was done. I’ve been on mtx and Enbrel for about ten years. I’m not pain free but it is mostly manageable.
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Cimzia 
update did i realy do the right thing?
Finally Appt with Rheumy Next Wk
Update to consultant appointment & triple therapy
