Newbie

[Sweetheart0377]

Hi everyone , got diagnosed with RA in January , it is now August and I'm still trying to find a balance of dealing with this condition . The rheumatologist keeps telling me this is the worst it will get and things will start to improve soon ,but each month gets harder to see the light at the end of the tunnel , I've tried most medications and am still not on the right dosage , it feels like Groundhog Day over and over again . Please tell me your coping strategies and secrets on how to deal with all this . In need of a little bit of hope

[Philip]

Hi sweetheart, lol, I've not to let my wife see me writing that lol. Hopefully the pains will ease somewhat soon.

Have fun in the madhouse.

Philip.

Oh and wellcome

[Sweetheart0377 in reply to Philip]

Lol yes please don't get into trouble over writing sweetheart . I've been hearing that the pains will ease for some time now but nothing changes 😢.

Thank you for your response though

Yours gratefully

Joni

[Carolsos]

Hi there, hopefully once you get the right medication you will start to feel better than you are. Have the consultant offered you a steroid shot?or you could ask your doctor for one to tie you over. What medication have you tried so far if you don't mind me asking? Take care

[Sweetheart0377 in reply to Carolsos]

Hello thank you for replying , so far I've tried methotrexate that didn't agree with me so for switched to salazopyrin . Also tried most pain killers got to the point where they even gave me a bottle of oramorph to take home . Don't like taking it often as it leaves me doppy . Taking co co codamols now 30/500 . Also saw pain specialist and he wants to start me on low dosage patches . Also on celecoxib . I went from taking a migraine tablet once in a blue moon to popping pills like smarties . 😢😢😢

[shazmill in reply to Sweetheart0377]

Hi there the patches have been a great help to me. I started on 5 now on 10mg.

Have you tried lefluidmide i went on it after salfalazine. It helped but gave me persistent cough do inbetween finding a new solution.

I would definitely ask your doctor for either a steriod injection or tablets to calm things down.

Aside from medication I have found attending pilaites and yoga helpsto keep joints moving a little easier.

I hope you feel better soon. Take care

[Sweetheart0377 in reply to shazmill]

I've been on steroid tablets since Jan , but unless they are a high dose they don't touch me , also being on high dose of steroids for a long time cause further problems down the line . So it's catch 22 when it comes to steroids . I'm hoping to start them patches this week I'm praying they will help

[Mhairi54]

Hi and welcome. You're in the middle of a really tough part of the diagnosis/treatment process at the moment. I was at that same stage this time last year, and thought the pain would never go away. They have now found a medication that agrees with me, and to a large extent I have my life back again, with far far less pain than I used to have. Hang on in there. It might take a while to find the "cocktail" that works for you. This is a fab support group. Take care. Mhairi.

[Sweetheart0377]

Thank you so much for them kind words everyone x

[Amy_Lee]

Dear Sweetheart0377,

Yes, it is a very painful and difficult journey for RA patient, I am very very sorry about your situation, I can understand that and I can feel how you feel.

I took mtx and arava for about a year then only I started to feel the reduce in pain. The process is very slow. If you like to know my experience with mtx, do go to my post "Methotrexate - My Recovery Journey" to get an idea.

I am in remission for more than a year, I came to this stage after a very painful fight with determination and a lot of hard work. Go to my profile, there are 2 very good video that I got most of my questions answered. You may also check out what kind of exercises that I did during the painful process.

My advice is to work closely with your rheumy and your physiotherapists.

Amy

[Sweetheart0377 in reply to Amy_Lee]

Thank you so much for responding it's so comforting to know there are people out there just like me who truly understand the pain we suffer xx

[AARA]

Hi Sweetheart0377,

Until your Rheumatolgist figures out how to get the disease under control it can be very tough.

I put up my first post last week to try to offer some hope and encouragement. It now has 66 replies.

You might find it helpful you might not. Try putting this in to search at the top of the page:-

Some Words of Encouragement. Severe RA and No Meds. Right Now. The Benefits of a Healthier Microbiome.

Here's hoping you find a better way forward for you very soon.

AARA

[Radiogirl]

Welcome! I'm a newbie, too. I was diagnosed back in March. I was on Sulphasalazine 500mg 2x daily. Around 3 weeks ago my rheumy's added Prednisone 5mg and Xeljanz ER. Plus I've had some steroid injections in my fingers/hand, knee and cervical and lumbar epidural injections. The injections in my hands (for newly developed trigger fingers helped a great deal. I, also, really feel the Prednisone and Xeljanz are beginning to help. Yay! I skipped taking the Methtrexate all together, so I can't offer any objectivity on that. What I can say is to hang in there, and keep coming to this site for support. It's the best! I'm from the US and found a couple of helpful forums based in the US, but this forum, to me, seems like the absolute best. So many kind, compassionate and informative people here.

Best of luck with finding the medications that work for you. Sending you hugs and prayers.

[Hidden]

Welcome

Don't give up it takes time unfortunately but it will get better 😄

[sylvi]

Sweetheart sad to say it does take time to get the dosage right. No one person is the same sadly and RA does different things to different people.Steroids do help and speak to your drs taking care of you about your choices and make a list of what is not working for you and see what is left.

You are not alone here we will always support you and welcome from me.xxxx

[Sweetheart0377 in reply to sylvi]

Thank you to all of you for your support !! It means a great deal to me . Xxx

[stbernhard]

Hello Sweetheart, you are at the most difficult stage of living with RA, but you ask for help, which shows that you are a fighter. Good on you! It may take a while, but I'm sure you'll find a drug combination that will work. Do you keep a journal of some kind so you can show your consultant how RA affects you daily? I just had a little notebook with a line for each week. On there I noted in different colours for pain, fatigue, mood and energy and gave each a number on the scale from 1 to 10 every day. I got the consultant to have a look at it and she thought that this was very helpful to her. I also was very aware that RA zaps my energy and I had to conserve it by having a rest whenever possible. Mindfulness training was also a great help to me. Hopefully you'll find your own best way to cope and get the right drug combination soon. Don't give up hope. All the best.

[AgedCrone]

I don't want to disappoint you...but 8 months really isn't very long in RA terms.

But instead of worrying, you just have to get in the mind set that eventually ( I know......that's depressing) something will hit the spot....because it will!

Have you had a holistic steroid injection....that usually takes the edge off so that you can think straight?

I'm convinced if I think I will feel rotten...I do feel rotten. It's not easy when you have joint pain, a head ache & feel sick all the time......but try to find something you really like doing.....even if it's only reading a book ..... I know that sounds a bit PollyAnna...but anything you can get emersed in might help.

Hope your meds kick in soon.

[Sweetheart0377 in reply to AgedCrone]

Thank you for taking the time to respond , doc gave me one shot of cortisone and to be honest it didn't do much . I know thinking about being in pain does make it feel worse and I do try to do the things I like doing especially jigsaws but it's a struggle when my fingers don't want to co operate . I feel like the tin man in the wizard of oz who needs a good spraying of oil lol

[Gnarli]

Hi sweetheart, I'm so sorry to hear you're having such a rough trot. Your rheumy is right, you know, that this will probably the very worst it can be and as soon as the right meds are found things will get better. Promise. See if things like warm baths, aromatherapy, massage (if you can bear being touched) or mindfulness help and be kind to yourself. Wishing you better

Jan

[Sweetheart0377]

Will try yoga , tried swimming but I end up shattered but I'm determined to do it lol

[Dynamoliz]

I am also newly diagnosed ... June. I started on MTX and LEF but was told to stop when my bloodwork showed elevated liver enzymes. This was discouraging as I was actually feeling benefits from those drugs. Now I am on Plaquenil and just added in Sulfasazaline but today I broke out in a rash and was told to stop the Sulfaszaline. It is frustrating as I feel I'm sliding backwards. The goal is to get me started on a biologic. Here's hoping we both get sorted out soon and on drugs that benefit us without causing other concerns!