I've taken it for 30 days now, still no let up in the pain I am experiencing. Thank god for the arcoxia and pain relief, as I am rely on them heavily to try and reduce the pain I am experiencing. I still get flares about 10-14 days apart, last about 4 days and I was diagnosed on 22 of august 2011.
Am I wasting my time on hydrox? The almost constant pain and tiredness is beginning to affect me mentally and I feel down at times now.
Will the pain ever stop???? Will I regain the use of my hands fully or will they just be a constant source of pain?
In November I see the consultant again and if the swelling has not been reduced (if anything swelling has got worse and I am now suffering joint pain in other areas), she plans to start me on methotrexate. I am not keen, but what I've read it can be a real benefit, so I am willing to try it now as I am fed up of being in pain.
Thanks for listening
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sciqueen
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Hi Sciqueen. Welcome to the site. I can recommend going onto MTX - it has been a godsend to nearly all of us on this site as it prevents further damage to your joints and also helps with the inflammation. If the Hydroxychlorquine has not worked in 6 months, they normally take you off it. It does take time to work - usually longer than 4 weeks - I was told 8 - 12 weeks! It didn't suit me at all and didn't seem to do anything for the RA, so I stopped taking it at the 6 month level and then told my consultant. He was a bit surprised to say the least but I don't believe in taking drugs that don't work.
Ask your consultant also about going onto anti TNF such as Humira or Enbrel. She may decide to leave you on the MTX for a few months to see how that goes before trying the anti tnf regime. Many of us are on a combination of MTX and anti tnf. If you are put onto the MTX tablets, you may get nausea and sickness with them so a lot of us have switched to the injections which don't seem to have quite the same side effects. You can get tablets to control the sickness/nausea and I used to space mine out during the day so as not to take them all at once. You can also get tablets to protect your stomach from all the meds such as Lansaprazole. Ask your consultant about that as well or your GP.
Try to rest in a flare up - otherwise you will just cause more problems and get very tired. My consultant advised a combination of 400mg of Nurofen (gel capsules to protect your tum) and 1000 mg of Paracetemol for pain relief and it does work. Also try cold packs or warm packs whichever works better. If my hands, wrists and fingers are bad in the morning, I run cold water into the sink and stick my hands in it for a few minutes which also helps. Try not to overdo things and think you can carry on as normal in a flare up. It is next to impossible and makes you feel much worse.
You are very newly diagnosed and it does take time to find the right combination of drugs and to learn how to manage the flare ups. NRAS has some very good booklets about RA - worth having a look at their website and getting a few. I have found them very helpful. They do one for your employers as well about the effects of RA and work. Hope this helps. Lavendarladty
Don't get disheartened the plaquinil is a first line medication, I am sure they will add Dmards ie. Methotrexate in and eventually this will slow the progression of the RA. The control of pain is a separate issue.
The blood results is where they see the inflammation lower as the meds take effect and this is primarily what they are interested in, as this indicates that the disease is being controlled.
i would agree with LL safest pain relief is to build up paracetamol in your system and it is an effective pain relief, but not for just occasional use, you have to take max dose each day. i would by far prefer to do that than to take codeine based drugs. It is all an individual thing though.
It will get better, but these are early days as LL says try and rest if you feeel poorly, and keep in touch with your GP.
LL I have just checked out the biologicals info on nras site. I don't think they will give it to me as, they are given to patients who cannot be treated with conventional DMARDS. I am thinking that I might ask for sulfasalazine in addition to mtx and the hydrox. I definately now want the mtx as I am desperate for some improvement.
I am taking codeine based pain relief. its been upted to 30 mg/500 paracetamols (thursday week by GP + Arcoxia 90mg). I don't have a problem with codeine so far, and its working. The only problem is that when I take 2 together it makes me drowsy and I want to sleep. I have to take 2 at a time since friday/saturday nite as I think I am in a flare again. Its not as bad as before, but I have experienced pain since thursday and my fingers are now curled. So I think that the drugs have muted some of the effects of the flare, but not all. i.e I don't have the throbbing pain, but its constant pain and the joint mainly the hand and wrist joints are producing heat again.
Sorry to hear you're really suffering at the mo. I was diagnosed in March this year and put on MTX. It did take a good 3- 4 months before I really felt relief but it certainly helps now and I have much better use in my hands. Your question really struck a chord with me because before I was diagnosed, I was in awful pain and couldn't do even the basic things we all normally take for granted. I have an ibuprofen every morning which helps get my joints moving and my consultant has recently added in Hydroxy to try and help a bit more and with the hope that in time I will be able to reduce the MTX. Try and keep positive but like the others I think MTX would really help you. Mags xx
Hi Sciqueen, Sorry to hear things aren't going well for you. I was diagnosed exactly a year ago, and I think the early days are the worst as you wonder if you will ever feel anywhere close to normal again! However it does happen! I remember this weekend last year as it was my son's birthday (7 last year), and I could hardly move my shoulder in particular due to the pain and stiffness, and suffered with pain and inflammation in hands and feet too. I wondered at the time what I would feel like by his next birthday which was on Friday just gone by.
I know everyone is different, but the meds do make such a difference. I started on hydroxy and etodolac (anti-inflam), at the start of October last year, and even a few weeks in felt absolutely no difference. I then started MTX on 1 November. Within 2 weeks I went to a family disco at my sons' school and danced all night! Suffered a bit the next day with painful feet, but considering a few weeks before that I thought I wouldn't be able to even go to it., didn't mind too much! By the end of November I was even wondering if they had it correct and that maybe I didn't even have RA afterall as I felt so good! Even all bloods showed as almost normal. Unfortunately I had to come off MTX just before Christmas as it caused extremely low white blood counts, but I have to say I have never had pain, inflammation and restricted movement as bad as I had before MTX. I started earlier this year on leflunomide in place of MTX - this too had produced great results. For most of this year I have really not felt too bad at all (almost normal many times!).
There are so many options for treatment - I think hydroxy is good to keep with even though it takes a long time to take effect, and usually isn't that effective on its own. I did feel the difference after I came off MTX and before I went on leflunomide when I was only on hydroxy....good luck and hope things improve soon! xx
I echo everything already written, I was diagnosed this year too and put onto a combo MTX and Placquenil in June (after a looong wait to see a rhumey) I was already on Steriods - which im currently reducing)
It does take a while for you to FEEL & SEE the meds starting to do their job imho and the only almost instantaneous relief I'd noticed was from the steriods!!
I've been on meds for 5 months now and had no further shoulder flares and within the last 3 wks (with the addition of a 3rd tab Leflunomide) can I definately see the swelling in my fingers going down - plus I can open jars without triggering 2 wks of swelling and pain lol!!
There are areas that are stiff in the mornings, but the pain is minimal/Intermittent with no real need for pain killers. I work fulltime and walk to work in the mornings (45mins rain or shine) its important to keep moving and active, not to cause your self agony but KEEP MOVING!! :D.
Basically relief will be a gradual thing hon, so gradual you may not even notice it as first, but you will begin to feel better eventually and your hands will stop hurting..
(When the pain was bad in my fingers i found a wax bath really soothing - do a search there are a few questions and blog about them)
I was diagnosed witH RA in 1994 and I was on Plaqeunil for 5-6 years and it worked GREAT! I had to have my eyes checked every 6 months but it was great, unfortunanly it stopped working after so many years..I was put on Methatrexate(pills) and was VERY sick from them so he started the mtx injections,,,my hair came out and was sick all the time and got to where I could not breath, it affected my lungs alot..but it does'nt effect evereyone the same....It origianlly was a chemo drug, careful with that one..Good luck on the Plaqeunil its a great drug and it takes awhile for it to start working but it will help you alot......
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When will I know if the drugs are working?
Left in limbo, I don't know how my appointments are going to work.
How do I carry on? :(
How long do steroid infusions take to work?
