Hi I am new here I was GP diagnosed in November 2015 , and trying to study a degree in Ceramics after two letters from my GP I have finally got an appointment with a Rh Consultant this June, Now have nodules on both hands, wrists, and it has just started to effect my feet badly, my facial skin, and back on occasion along with Chronic fatigue most of the time, I have the odd day when I feel relatively normal followed by a slump into Chronic fatigue. First time it happened it was like a bouncy castle being unplugged. My question is how long does a flare up go on for I feel like I have been in flare up since November bar a couple of normal days, its good to read other stories but also depressing cannot see how people can lead any sort of life with this condition I have tried numerous diets and alternative therapies without success, I have not seen a specialist yet so no toxic drugs taken yet , they terrify me, but feel I will have no choice but to take what ever they offer if they offer anything some of the stories on here are not great ,if my Gp had not sent a second letter I would of had to wait 18 months to see someone on NHS by then I cannot imagine what sort of state I would be in its bad enough after waiting 7 months and on the brink of giving up my full time course and going part time if I can get financial help through a disability claim which also sounds like a huge process ,supplying xray evidence etc its not enough a Docter tells them they want xrays !! It feels like an enormous task is ahead of me, so enough of me ranting Flare ups how long do they last ?Thanks Amanda
- Flare ups how long is an average flare up - NRAS
- Flare ups how long is an average flare up
Hello, I'm sorry that you've had such a hard time getting taken seriously. Is your GP helping you at all, or suggesting things like steroids or better anti-inflammatories than the over the counter ones? Hopefully things will improve dramatically after June.
Anyway, if you are not yet having any treatment, then basically your RA is completely uncontrolled. Comes to the same thing for you, as hurts just the same as a short term flare, but suggests that you really do need treatment to get out of this state and get some control back.
But it is amazing how your life can turn around again once you do get treatment. I was in a dreadful state by the time I first started on the drugs, hardly able to move or get out of the house and permanently exhausted. Now I'm just about completely fine! The drugs have been brilliant for me, and with hardly any side effects. Yes they are toxic, but so are many drugs - even herbal supplements can cause severe problems. As far as I'm concerned they work, and have given me my life back, and that's good enough for me. I was afraid of them before I started, but now they're my best friend.
Same here. If you look at my posts back near my diagnosis I was in a terrible way and place. But I'm now able to look after my twins, now 3, and lead a relatively normal life. I'm on injectable methotrexate, hydroxychloroquine and sulfathalazine. Stopped taking pred 3 weeks ago (had a steroid shot to help). It is terrifying and so very scary but your Rheumy will, hopefully, start you on treatment and try to get you started in the right direction. Gentle hugs
hi helixhelix
What medication are you on?? So far I have been allergic to Methantrexate, Hydrocloraquine, and am now on Sulfasalazine and Leflunamide plus steroid injections as and when, but I am sill in a lot of pain and so exhausted and tired, my Rheumy says I don't qualify for biologics, I think it is the expense for a 70 year old !!!!!
Same as jlmack - methotrexate, sulpha and hydroxy. Plus Anti-inflammatories as and when I need them. But Leflunomide seems to work equally well for some people, so hope it does for you.
The whole approach to qualifying for biologics is medieval, but they do have potential side effects too and the older you are the more the poetential for serious infections could be a concern I think. So the doc might be doing you a favour in the long run....
Just to let you know YOU DO QUALIFY for Biologics if you have failed on just TWO of the other drugs offered. This is according to NICE guidlines. I have failed on two and am now only on Steroids Prednisolone so I am hoping to be offered Biologics I am 67. I am at Rhumy clinic tomorrow wo I will let you know what they say about Biologis. Keep nagging. I am really afraid of the next lot of drugs I will be put on because I have had such severe side effects on MTX and Sulfasalazine. (Sulafasalazine gave me a very severe rash with burnt skin and severe itching which meant I couldn't sleep at night for 6 weeks) It started 8 weeks ago and I ended up in Dermatology ) Its begining to clear up now thank goodness but it has been really aweful.
I agree with you I have tried 3 different meds now, biologics was mentioned a while ago, but Still no joy. Like you say they are to expensive. Apparently £10,000 a year for one person it said in the biologics write ups. Wish you A good day.
Hi
Am so sorry you have had to wait so long before getting to see a rheumy. I have had a similar experience to helix, was absolutely floored when this condition first kicked off .... I had no life at all during that time .....2 years ago now.....couldn't work,couldn't sleep, couldn't drive ( couldn't bend knees enough to even get in the car) couldn't get in or out of the bath....and constant all consuming tiredness. The future seemed extremely gloomy. Once I got to see rheumy, they gave me a steroid jab and started me on treatment. It took a while to get a combination to suit me, but now, I am mostly fine and getting on with my life. I've been lucky and not had too many side effects from the drugs.
I think what you are experiencing now is uncontrolled RA, once you get on some meds things will improve and hopefully you will never feel as bad again as you do just now.
Good luck
Hi Amanda -- sorry you are having a really rough time at the moment. Like you I was in a mess , struggled for 4.5 years before being diagnosed in sept 2014. I was absolutely terrified of taking the " toxic drugs" but have to say I now have most of my life back - still work full time and can do most things with my young grandchildren. Good luck with your consultant appointment and let us know how you get on. ☺x
I've read that flares can last 24 hours. Mine tend to last 1 year. But then, maybe that should be considered "uncontrolled" rather than a flare. So for me, it's either controlled or uncontrolled! Patience is in short supply, but often the most important aspect to RA. Also, the drugs are horrible and toxic but can greatly improve your quality of life. Good to have a good arsenal - drugs, diet, exercise (modified to your abilities) and meditation. Massage therapy can also be nice. Anything that forces you to stop everything else and focus on you! Good luck. You'll get through these days.
I think the duration of a flare is different for everyone, there is no 'standard' they can last anywhere from a day, to weeks, to months, to years.
Hi Amanda.
Sorry to hear you've been in pain for such a great period of time. I think lots of us have similar experiences when pain begins. It does sound like uncontrolled flare up. I was also scared to take toxic drugs and viewed them very much like that. Now that I have been taking Humira for 12 weeks, I can honestly say it is a wonder drug that I'm always grateful for, it has given me the ability to work again, to walk again, to see my family again, it's given me my life back!
I tried a couple of dmards before this biologics which made me feel sick but again did help in some way, it can take some time to get the right drug for you. I hope your appointment goes well.
Some advice: write down a list of ALL symptoms you've experienced even if ou don't think they're related, and do some reading on treatment options so you feel prepared.
Very best of luck, take care of yourself
Terri
Hi I have a lo of flares as they haven't got the meds right for me yet. The longest I had was for 7 months when GP's kept telling me it was my weight!!! Finally a new GP got my bloods done and found out. Was I glad as I was beginning to think I was going mad as only my family listened to me good luck don't give up you will get sorted and don't take NO for an answer.
You sound like you're drowning and nobody is throwing you a life belt !!! DON'T PANIC. Nearly all of us have been there and back. Try not to be so negative and learn how to tread water. Flare ups are so different for all of us. They may only last a couple of hours, weeks or months. How long is a piece of string ? It's a learning curve both emotionally and physically. You will learn and cope - just allow yourself time. Take care.
My own experience was that, untreated, I went on getting worse and worse and worse for 3-4 years. By last summer, I was in constant pain, had systemic tendon/entheses swelling, bursitis, plantar fasciitis, deforming hands and feet, a hip replacement, IBS, a chronic sore throat and sinusitis, various rashes (I have PsA) and an eye that swelled up like something out of a horror film... (I think that's everything...)
Then I got diagnosed, and was given a higher dose of NSAIDs and started on hydroxy, and switched to methotrexate in Feb. Now I take a daily NSAID, take folic acid most days, and inject mtx once a week. My pain is down by about 80%, my swelling is mostly gone, my energy is mostly back, all of the symptoms I list here are gone or going, and I feel generally much, much better.
I was afraid of the toxic drugs too. But I think it's fair to say that the damage uncontrolled inflammatory arthritis does is a lot MORE scary.
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Post holiday flare up............
