Looking for community!

[Sparrowtracks]

Hi! I was diagnosed with RA over a year ago. Have been on prednisone since, which worked well in the beginning but flares have been fast and furious the past few months. Just looking for support as I move forward in this painful journey.

[allanah]

Morning. Well you are in the right place. This site really helped me with advice and support. Do you have a rheumatologist ?. Are they thinking of starting you on rheumatoid drugs such as methotrexate to treat the disease as well as your steroids.

If you haven't discovered it already look at the National Rheumatoid Arthitis Society NRAS website. It's packed full of information especially on initial treatments.

Good luck and keep asking questions here . Xx

[Sparrowtracks in reply to allanah]

We haven’t had insurance until recently, but now I am seeing a naturopathic immunologist. Her mom is a rheumatologist so she’s open to both natural and traditional treatments. I will see her again in June to discuss options since the prednisone only works to a certain point and has created other health problems for me. What has helped you?

[Gnarli]

Hi Sparrowtracks. I wish you hadn't had to join us here but you have found a helpful and friendly place peopled with well informed folk happy to share experiences and knowledge. I'm quite surprised that you haven't been prescribed any anti-rheumatoid drugs as yet. Steroids have their place, obviously, but come with their own side effects. Wishing you well

[Sparrowtracks in reply to Gnarli]

My GP referred me to a naturopathic immunologist after she diagnosed me a year ago. I prefer to go as “natural” as possible. The immunologist put me on low dose pred, which worked for a while but I am having a bad flare now. I see her again in a few weeks. Her mom is a rheumatologist, so she’s well versed in all ways of treating RA. My body just doesn’t respond well to many meds, and i’ve been afraid to try other things. I didn’t think I had any side effects from prednisone except for insomnia, but I was just diagnosed with osteoporosis and am pre-diabetic. So not sure what is next . . . So glad to have this community for help and support. What has helped you?

[medway-lady in reply to Sparrowtracks]

AS steriods are well known for causing certain other medical issues I'm shocked that you are being advised its natural !! And you'd be given Vit D, to counter the risks along with a stomach protector.So my question are you sure are about this immunologist ?It is in my view highly unlikely that you'd be aware of getting oestopororsis so soon from Prednisolerone so it may be co incidence. Diabetic I'm sorry but I have no knowledge of but would urge you to seek a second opinioun as if you in the UK you'd usually be referred to a hospital for consultation. If your not then its hard to know what to suggest as your health care system will be different. For me I'd say medications work and work well and Pred. is used to make a swift impact but not as a permanant treatment. In any event if you read the PIL it'll cause weight gain (moon face) and I'm forced to take it as have kidney failure and promise you its not a gentle or begeign drug at all. Do please look up NRAS website as so many medications can be given which do work.

[Sparrowtracks in reply to medway-lady]

I will do that, thank you. My immunologist recently went to a conference that discussed the pros and cons of low dose prednisone. She went to it with an anti-pred mind set, but came back feeling that maybe the benefits of low dose, 5mg. And under, outweighed the rest. I was able to get down to 5mg. Every other day and felt amazing, but an extremely stressful situation last fall triggered a flare that I am still dealing with. Almost down to 5 again, but need to figure out how to not let stress trigger me again. Is that even possible?

[Gnarli in reply to Sparrowtracks]

Diagnosed (finally) two and a half years ago I'm afraid mine was the meds-based treatment. I tried Sulphasalazine and hydroxychloroquine but both gave me unacceptable side effects. Methotrexate, first as tablets then metoject injections, has been the only med so far to ease the awful pain. I have only ever been given prednisolone in short courses causing crashing insomnia and heightened emotions. Unfortunately, I still have fatigue and brain fog on occasion but life is so much better. I hope you can find a way forward. Wishing you well

[Sparrowtracks in reply to Gnarli]

Thanks! One of the hardest things for me is that I was so strong and healthy in my 50’s—I’m almost 63 now—and my friends and family, and especially me, find it so baffling that I can’t do the things I used to. On a good day, I go nuts doing all the projects that have piled up, then stay in bed the next few days. If I can’t grasp the scope of this illness myself, how do I expect others to get it? And help me? Do you know of a good site for the friends and family of RA peeps to gain insight? Wishing you continued relief of pain!

[Gnarli in reply to Sparrowtracks]

I'm just two years older at 65 and, yes, trying to accept the drastic changes in our health and energy levels is so hard. The frustration of knowing what needs to be done and how to do it but not being able to is awful. Pacing yourself is key. Do a bit, rest a bit. I still struggle with that one. I don't know of a support group for relatives and friends of those with Rheumatoid disease but there is lots of information available from NRAS here in Britain. Am I right in assuming you're in the States? I would hope there is information and support available there. I truly hope you find your way through all this

[Hessie5]

Hi - this is a good community with some knowledgeable folk too. Sorry to hear of your diagnosis and it is indeed a boat ride, where you never know what to expect. What country are you based in? Are you on any RA meds at all?

I was on prednisone for 3 months to dampen high inflammation - came off and it all came back. Are you just taking 5mg a day? As I was always told you have to wean off, it’s just an interim drug.

I am now looking at other ways too that's compliments both standard and natural measures to healing. Wishing you well on this journey.

[Sparrowtracks in reply to Hessie5]

I am in the US. Just using prednisone at the moment, but I feel like I need something else. I up the dosage during flares, then always try to wean back down to 5mg. My fingers and feet are often so swollen and painful I worry about permanent damage being done (the pain comes and goes, as you know). I see my immunologist in a few weeks and it will be interesting to see what she suggests next. Her mom is a rheumatologist, so I trust she knows what she’s doing

[Hessie5 in reply to Sparrowtracks]

Keep us posted. My hands are awful at the moment cant bend fingers, taking Ibuprofen but may have to go back on prednisone. I am going to see an Ayurvedic doctor next week, as really need something that works for me. Hope your appointment proves helpful. Hessie

[Sparrowtracks in reply to Hessie5]

Let’s definitely share info! There’s a stem cell seminar in town this weekend, it is supposed to help with RA pain. I signed up for that. It’s free, so can’t hurt to check it out,right?

[Hidden]

Hi sparrowtracks

Sorry to hear you have RA. Have you still no insurance? Methotrexate and sulphasalazie are IST line drugs used and not expensive. I understand you wanting to keep things natural but you have an autoimmune disease that is damaging you body and you need something to halt the inflammation. Prednisolone only masks symptoms, disease progression carries on in the background.tjis is why immune suppressants are prescribed as early as possible. The only other way to treat this awful disease is the autoimmune protocol which includes sleep, diet, exercise and lowering stress.

Check out Dr SarahBallanty e. I'd this for 4 years and was really well.

Best of luck.

[Sparrowtracks]

I will check her out, thank you. I do have insurance now, just often have bad reactions to medications so am hesitant, but I know I can’t let the disease progress.