RA

[SassyRA]

Hi I am 43 & diagnosed April 10, 2017 with rheumatoid arthritis. I was put on 10mg prednisone, 1mg folic acid everyday & 2.5mg of methotrexate once a week two times a day. I am also anemic & have a vitamin d deficiency. I joined this site to see how other people are coping & to see what ideas they may have

[Hidden]

Welcome to this site Spivey. You will find that this forum is a lifeline, as it was for me in my darkest days.

Once your meds kick in, you will live a full and complete life. Have blind faith in your doctors and do whatever they say. Once you are both phsyically & emotionally strong enough you can give your advice to them and work as a team.

Please understand that folic acid is variable. Follow your doctors advice. Some people take it 6 days aweek, not on mtx day & some people take it 7 days aweek. Some people take 1mg, and some people take 5mg . Please don't fret, I did until I realized different countries have different rules. Follow your doctors advice and that will be one less thing for you to worry about.

Take care

Sue

[Eiram50 in reply to Hidden]

To be fair , I'm not sure how accurate it is to say that when " you're meds kick in, you'll lead a full and complete life?". Whilst for sure, following huge amounts of surgery , with more scheduled, my capacity has increased and meds are, at best holding things. I could Never describe this experience as being full and complete ?

[Hidden in reply to Eiram50]

So true Marie, but everyone is different. When you start your RA journey, it is best to understand that the majority of people live a complete & full life with their meds. You & me are the exception to this rule, or so it seems.

Spivey is new to living with RA and I'm sure you will agree that no newbee needs to be overwhelmed with the "worse of the worst" case of RA. I've never needed surgery, and I never have been in remission for more than 5 weeks at a time. My RA was snowballing out of control for 4 years with no end insight...I was heading for death and then BAM..... now I'm almost RA free. RA is a dreadful disease, the dmards help the majority of it's victims live a full life.

Peace & love to all

Sue

[Eiram50 in reply to Hidden]

Hi sue

I absolutely agree with you in relation to sharing positivity and that people can live well with this disease - and you'd be correct in so far that my comment will be coloured by my own experience.

However, I know for me , given my experience, I would have felt somewhat gutted had I been told that I had this condition but with treatment, I would live a full and complete life- and it turned out not the case?

I guess I'm just sensitive to the wording ( and the promise) perhaps?

Apologies if I offended though, it would never be my intention too.

Take care , marie

[Hidden in reply to Eiram50]

No apology needed Marie.

[MarshaM]

I am 66 and was dianosed in 2013 w RA. Took a few months and 30 days of prednisone to control the inflammation but its been good For a while now I'm on Hydroxicloiquin, methotrexate, & Humira.

I've recently changed my diet and feeling like I'm going to beat this nasty thing.

[1goldie in reply to MarshaM]

Hiya from another 66 yr old! Just started 2 weeks of prednisone this am for urgent flare up. Hoping to get unto Hydroq. again. Do you have to take it with methotrexate for effectiveness? What are the side effects? What can you do now that you were not able to do pre med? You don't have to tell me ALL!!!!!! I am still waiting for a confirmation as at present they say its UCTD, the umbrella name for undiagnosed. Xx

[MarshaM in reply to 1goldie]

It took a few months for the meds to work. The hydroxy didn't kick in for 4 months and only after my Dr put me on pred for 30 days. I don't think MTX is necessary for hydroxy to be effective. I think the key was getting rid of the inflammation throughout my body and then its been good since then. In fact my Dr has been reducing my MTX for the last yr from 8 pills once a week to 4 once a week. I don't have any side effects from any of the meds I'm on.

Told my Drr I was on this new raw diet and my inflammation is way down. I posted a link in a general msg to this site about the diet if anyone cares to watch.

[phil_54]

Hi Spivy, suzannedale just about sums it up for us the forum is really a lifeline you can talk to everyone about everything you are experiencing and for me personally it really helps, I found that listening to the medical pros does help you to understand the mechanics of this condition but speaking to fellow sufferers i find invaluble because they are the ones that really understand your concerns or worries etc etc, I was diagnosed in 2014 and for the first 12 months felt unbareable but as i started sharing my thoughts with the forum i realised i am not alone so like ive said in the past its good to talk,

The other thing i have found is although the medical pros are very good its only really you that knows how you feel and its really a case of finding that balance between overdoing it and knowing your limits or boundarys, the medication will help once they work out what works best for you but this can sometimes be a lengthy process so just please please stay strong and hang on in were all here to listen and help each other when we can.

All the very best luck in the world

Keep posting

[Eiram50]

Hi spivey

Welcome . I would echo that said by Suzanne. This is a great place to be! You've stumbled on a great site full of knowledgable, compassionate and caring people who will be able to share their experience with you , offering great advice.

Wishing you the very best on your journey and hope to hear more from you, going forward .

Marie

[Matilda_1922]

Welcome to this site

I had anaemia and Vit d deficiency before I was diagnosed with RA. My gp started me on Vit d treatment for 8 weeks then checked my bloods again and level went up back to normal. I was told to get 30 mins of sun on arms and face every day between April and October. After this I mentioned it to Rhuematology nurse and they said a lot of people are Vit d deficient so thought no more about it. I made sure I sat in sun when out as much as possible.

Earlier this year my Vit d levels were down again more supplements so I must be prone to it.

The anemia is due to RA and will usually correct itself once on RA meds.

[jane1976 in reply to Matilda_1922]

I had to have a course of bit D due to anaemia. Then I was told I have chronic illness anaemia & vitD won't help?

[Zip1]

Hi and welcome. As others have said there is every hope to get RA under control, I was diagnosed two years ago and am still trying to find the right balance of meds but feel I am getting there. At first the seemingly constant round of blood tests and appointments seem relentless but in time they become routine and not too troublesome, I'm off to get my bloods done now! Keep positive and keep reading this forum it has helped me no end.

[1goldie]

would be interested in how you are doing in a few weeks.! Put on 20mg prednisone for 5 days reducing to 5mg in 15 days today as literally couldn't move lots of joints for the past two days. Very sudden, I thought the heatwave caused it! I will be put on more then but guess this had to be hit hard. Can now stand and walk slowly without stick and hold kettle to make tea!!! Happy ending today! Xx