How do you know

Hi Everyone, as a person with newly diagnosed RA I have had a few odd questions (although the fatigue makes me flit between thoughts randomly and most I forget!) but what I was wondering is this...

I am on Hydroxychlorquine and Methotrexate (and oh boy do I appreciate the feels worse before feeling better thing!) and I know they take up to 12 weeks to work if they are going to but in people's experience was it a very gradual thing of pain and fatigue slowly going away or is it a more dramatic "hey I'm not in pain / I gave some energy today type thing?

I know RA is not the best think to have when you are someone who has to know everything (why what how when) but at the moment I have no clue as to what may or may not happen!

Thanks

20 Replies

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  • Welcome to the site :) . I started feeling the positive effects of mtx on my 9th week on the drug. I was so excited as I actually felt a "draining" feeling from my swollen hands. I expected to be back to my old self the next day. Just as RA hit me overnight, I just assumed I would be in remission overnight....Well that was September....it's now December and I am improving every week. I still have some swellings, but I have no pain. My doctor says it could take up to 6 months for the full effects to kick in. I've been on MTX for just over 4 months now.

    Take care

    Sue

  • My consultant told me Thirsday it could take upo to six months for the hydroxy to really feel the benefit darling.xxxxxx

  • Yes my experience is the same as Sue, above and I'm at the same mtx stage. Just realised I wasn't stiff in the morning and my hands lost their puffiness.

    I'm feeling better every week, able to do more and more. Still get some fatigue but it's a lot better and I've learned to listen to my body and eTest when it tells me to!

    Good luck! Ally x

  • That should be "rest" not etest lol!!

  • Hello,i am sorry you have joined us,but let me tell you this is the best thing you have done since being diagnosed with RA. Now to the question of when you start to feel the benefits of the drug regimen you have been given. For some people it can happen straight away,but for others it can take the whole three months or more. The secret now for you is to pace yourself from here on in and the sooner you learn that the better it will be for you darling. I am still learning how to pace to be honest after 14yrs of having this disease. Its a case do a bit and rest a bit then do a bit more and rest some more. Don't do what i do when i am having a good day and go hell bent leather into doing as much as i can because i pay for it the next day. I am getting better at this pacing lark.

    Always post your questions and i mean any questions no matter how trivial you thing they are,you can quarentee someone will have asked a similar one and they will always have an answer for you. Also NRAS have a helpline which they will help and support you and having met some of them i can tell you they are lovely. The lovely lady who leads NRAS has ra herself so she knows what it is like and the staff many the helpline are well trained.

    Hugs from me and welcome.xxxxxxx

  • I read the part you wrote about after 14 years of the illness & pacing yourself, going hell for leather then paying for it afterwards, to my husband. He said that's you to me, !! I laughed, there's not only me who never learns!! X

  • I got the biggest relieve from the initial steroid shots. Mtx, sulfa etc. took some time to kick in and stabilise my condition. It's very different for everybody. I believe the most important thing is to combat fatigue. Pace yourself. Think that you have a limited amount of energy available and pack that up in small parcels at the beginning of the day. Once the medication kicks in it will become a lot easier for you to take control back. Just remember that you're not alone, we all want answers and are here for you. Take note of Sylvi's line about NRAS, well worth it. I wish you all the best on your journey and stay with us!

  • On the contrary TTCC I think it's a good thing to have an inquisitive nature when you have a chronic disease. From my perspective (as one who also questions & researches everything!) you help yourself in managing your disease if you understand as much as you're physically able to do or take in, if that makes sense?!

    Your question however isn't an easy one to answer because we all react differently, some have a slow build up & don't really notice the improvement, others have a eureka experience & suddenly feel a big difference in lack of symptoms. Mine was different again because when I was diagnosed I was prescribed steroids to reduce the inflammation & pain & I'm pretty sure they were still working when HCQ kicked in because I was 'a lot better' from pretty much starting my meds, I should say I was also prescribed a couple of NSAIDs at the same time, one to take daily & another to take if I felt I needed additional help.

    When I started MTX, my second DMARD & as double therapy with HCQ, I have to say that it didn't seem to be working. When HCQ was stopped the MTX then seemed to work pretty quickly, but that may have been my mind playing tricks on me because I knew HCQ had more or less stopped working but by then I'd been taking MTX a couple of months or thereabouts. So no clear answer I'm afraid but I'm sure (from my experience) that being prescribed just a DMARD isn't as helpful as also being prescribed either/or a steroid (oral or injection) & NSAID to ease the inflammation & also the pain whilst waiting for the DMARD to build up to it's full potential. Presently I'm on MTX & recently leflunomide has been added. I don't feel too much different just yet but it is still early days, a little over a month since LEF was added & I'm just getting over a mini flare which doesn't help determine I'm getting any benefit from it.

    Hope this helps? Oh & welcome! If you'd like some more reading have a look through these, NRAS nras.org.uk, Arthitis Research UK arthritisreasearchuk.org & Arthritis Care arthritiscare.org.uk (information overload!) or you could always ask specific questions here, there's always someone who'll have experience or relate to your question.

  • The trouble with this disease is that there is not one answer but many different ones. We are all different, there are many variations of RD (rheumatoid disease) and the drugs react differently with each person. For some methotrexate on its own is enough for many years whilst other have a mix of a number of drugs. It is more likely to be a gradual improvement over time as the drugs start to have an effect. Most people have to make some allowances for their disease going forward. Some find that diet has an impact but for me personally I have not been able to pinpoint anything. NRAS or arthritis research are good websites for information. Farm

  • It's good to question things, and the more you learn about the disease the better able you'll be to manage it.

    For me the improvements were very gradual - but exciting! There was the day I could tuck the sheets in without my fingers hurting, the day I tied a pair of shoelaces without wincing, or managed to walk to the better greengrocer that was 100 yards further away. I kept a record, as that helped encourage me, and because it was only by looking back that I could see how much I'd improved.

  • I still remember the day I snapped my fingers when I remembered something and stopped in my tracks because I snapped my fingers - ha ha. Then I couldn't remember what I snapped my fingers for :-)

  • Hi TTCC - Welcome to the group. For me, I had a one hour period one week at around the 3rd month that was pain free - totally pain free, then it came back. BUT the next week it doubled to two hours and continued that way for a few weeks until I had 2 days a week or so that were generally pain free. Then the MTX stopped working as well and things kind of moved backwards until she decided I needed something else with the MTX.

  • Hi,

    On the contrary I think how/what/why/when is good. I think it helps you gain control of your RA. And by gaining control it puts you in a better place mentally. So keep questioning.

    Like you I am on HCQ and MTX, but I was also on a higher dose of Pred to tied me over. Like one person said I had that sense of the inflammation draining away especially from my hands. Then suddenly one day (sorry I cannot remember when) I noticed that within 1 min of getting out of bed the morning stiffness had gone. It was wonderful!

    The fatigue took much longer to subside. I'd say around 11 months. But this WAS a eureka moment. As suddenly the brain fog lifted and I was able to think straight again and then I noticed I just wasn't as fatigued any more. It's not all gone, I'd say around 70 to 80% has gone and it stays that way as long as you pace yourself.

  • What are people's thoughts on fatigue? Is it part of RA, or the drugs we take for it, or a bit of both?

  • I am sure my fatigue is a big part of RA as I have been hit really bad with it before my diagnosis and therefore before my meds.

  • I have RA in my hands and knees. I take nimsulide(its trade name is NIMS). It is very effective. I take it for 5 days and then give a gap of one week, and so on. I read that it has been banned in many countries but here in Pakistan it is not banned. But let me tell you it is very effective and I have had no side effects at all. Anyone who knows about it may advise me further. Will appreciate it.

  • Have you tried other drugs in the same family (NSAID or non-steroidal anti-inflammatory drugs) that could be safer for you? Your one has a reputation for liver damage, which you wouldn't notice until it had gone quite far. A lot of people prefer Naproxen or Arcoxia, which work in a similar way.

    But all drugs have risks, and that includes natural supplements, so it's a personal choice about what risks you are prepared to take.

  • Thanks. You are right. All pain killers have side effects. I know continuous use of nimesulide can affect your liver. That is why I take it for 5-7 days and then give a gap of 7 days. My liver tests are OK. Believe it or not , it is very effective. It is still used in many countries. It was never applied for marketing in the USA or Australia. Anyhow if it does not affect your liver, there is no harm in using it. Moreover I have found physiotherapy very helpful in RA. Best of wishes for those who have RA.

  • Nimesulide wasn't ever made available here in the UK, or the USA & Australia I'm afraid, due to it's safety profile. I would urge you to have regular blood tests to make sure your liver is functioning correctly, if you don't already as part of your drug monitoring. I'm pleased you have had no side effects but this anti inflammatory doesn't have a very good safety record though there are others available in the same group which work the same way & are safer. Please discuss options with your prescriber.

  • I am also new to this site diagnosed with RA in January didn't get to see Rheumatology consultant until end of June. Put me on MTX 20mgs and 2 tablets hydroxychloroquine taken swelling down. They wanted me to go on sulazine but couldn't cope with it!!! Now l am suffering from numbness in both thumbs and finger tips???pain in my fore arms it feels like the bones are crunching against each other. Dr has put me on amitriptyline 10mg this week to help ease me whilst l sleep!!! Hate this disease

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