I had my appointment at the Pain Clinic yesterday. My rheumatologist organised this, and at the time I felt he was washing his hands of me.
He told me he wanted a second opinion on what was causing my pain…he can’t get passed my mostly good blood work, even though it was he who explained to me that many people have seronegative Rheumatoid Arthritis, and relatively normal bloodwork.
Usually, so the theory goes, seronegative disease is mild, but this is not the case with me. I haven’t responded to any treatments except prednisone, so its easy to look at my clean blood and non-visibly damaged hands, and forget all about my ultrasounds and bone scans which show inflammation, synovitis and joint effusions.
His conversation was getting dangerously close to ‘it’s all in your mind’ which for me is a red rag to a bull.
He again explained that my pain might be caused by Fibromyalgia, rather than Rheumatoid Arthritis.
He has since sent me a letter making an appointment at the Biologicals Clinic. So he clearly has had second thoughts. That appointment is not until January 30th, 2013, but because of its existence, I have been inspired to ‘toe the line’ and follow his treatment plan.
Let’s face it, I need him.
So. I have tapered down to 7.5mg or prednisone and dropped my Naprosyn to 1000mg per day.
Life is horribly painful. This post covers what an average day with rheumatoid arthritis feels like.
It is very, very hard living with this pain when I know that if I up my prednisone to 15mg per day, about 50% of the pain will go away. My joints will cease popping and grinding. I will move more freely. I will be able to jog sometimes and work out at the gym.
But if I want any chance of getting onto a biological Dmard – very hard to qualify for in Australia – I have to do as my rheumy says.
So off to the pain doctor for another opinion.
He was a good doctor. He asked all the right questions, and listened to my answers. He assessed my joints, and asked exactly where the pain is and asked me to describe it.
He explained there are two main types of chronic pain – nociceptive pain and neuropathic pain. Both have very different causes, and respond to different medications. Rheumatoid Arthritis pain is nociceptive pain. Fibromyalgia is neuropathic pain.
Fibromyalgia often co-exists with Rheumatoid Arthritis. Some doctors even misdiagnose Seronegative Rheumatoid Arthritis as Fibromyalgia, just because the blood work is clean. The two diseases are very different, although they do overlap and co-exist.
Anyway, I asked the pain doctor where he thought my pain was coming from and he felt it was quite clearly nociceptive pain caused by inflammatory arthritis. He felt that my pain has been undertreated for many years, and that if we could get my pain under control, my quality of life would improve.
Sure, I agree totally. The less pain the better as far as I’m concerned!
And I must admit, I haven’t wanted to take large doses of narcotic medications to control pain, so I am at least partly responsible for the undertreatment. I have often prefered to ‘tough it out’. I don’t want to be a functional addict. Or potentially a non-functional addict. I have spent weeks at a time on slow release morphine, and ultimately I always stop the morphine and prefer the pain to the nauseous zombie I become.
I much prefer prednisone, which while the side effects may be potentially disasterous, actually deals with the *cause* of the pain – the inflammation – and reduces it.
Opioids only mask the pain, and they don’t take it all away. They only dull it somewhat. And I am experiencing a need to take higher and higher doses of oxycodone to deal with the pain. I am now taking four times the dose I was taking six months ago.
And my pain is not under control.
So the plan of attack? A pain patch. The strongest one available – norspan (buprenorphine). It’s a seven day patch. It will reach steady state in three days. The doctor warned me that the first day I will probably feel nauseous, dizzy, and sleepy. All the things I hate about opiods. He asked me to persevere.
I don’t like this plan.
I want to up my prednisone and just stay there. I will risk the consequences. A semi-decent life now is more important to me than a healthy, old age. A healthy old age was off the table five years ago, whether I realised it or not.
But I need to do as the doctors say. They hold the power. They are the gatekeepers to biologic therapies. The ones that could change my life. Or not work at all.
I think I have a right to access every therapy that’s out there…but there are hoops to jump through. And so I will try the pain patch. I fill my prescription this afternoon, and will slap it on my arm tonight.
In two weeks I will see my third opinion rheumatologist. She may offer a quicker pathway to biologics, or have another treatment option. So I will try the pain patches for these two weeks and see how I function.
I suspect I won’t be able to go to the gym – which I can do on prednisone. I suspect I won’t feel very good at all. But I shouldn’t prejudge. The patches are supposed to be better than the oral drugs. But I will just have to wait and see. Again.
Hurry up and wait…
Hi
So sorry to hear of what sounds like an identical struggle I have had for the last 3 years , in fact longer
I have at last got a Rhuemy to agree to a trial of Humira , and if it does work , well I have to pay
I can’t afford it ,but I have to , I will find a way , I have savings and these will help in the short term IF they work…
There is a lack of , Knowledge within the profession of Seronnegative USPA’s , in our cases a full history is a must ,so why are not given a standard for with questions in order to capture this?
The BASDI index does…
Anyways I could go on and on , but wont …right now
Ultimately Rheumys give up because they think there is nothing they can do for you ,as A TNF as not an option as even if it is a USPA its not with in PBS
Im afraid the only way you will get TNF is by the strict criteria , I have Osteoporosis so Pred is out for me
Have you thought about asking for a 3 or 4 month trial ,I know its expensive , but at least it may prove or dis prove a USPA….
Love your site , dont ever give up , I wont , even if they do
Phil
Thanks Phil – love your attitude, your positivity shines through! I really needed some of that today, so much appreciated.
So many rheumies DO give up. I know a lot of us are hard to treat, and it must be frustrating for them too. But I think sometimes they forget we are just people looking for help. Not blood work numbers, or statistics…people in pain. And I know some rheumies find ways around the rules. I’m sorry that you will have to pay out of your own pocket…its not fair that you have to. But, as you say, if the drugs work, then its worth every cent. Good luck I really hope you have some success. Please write back and tell us how you go – here or on the facebook page?
Maybe in the future I’ll be in a position to ask for a trial…I have heard that if you do a trial, and the drug works, you can then be covered on the PBS. I will try to dig out the document – that would be very handy for you!
Again I hope you get a trial of TNFs and they work for you. And I won’t give up either!
I uesed to take these medicines and had good suecscs. But I forgot after a while and was operated, because the doctor said, everyhing would be as before operation which was a lie!When I now start to use Chondroitin and Glucosamin again, can this even reverse a light arthrisis in several (other) parts of the hand etc. ?Thank you!
Hi Rafael, I’m really not sure about Chrondroitin and Glucosamine – I was under the impression these might help osteoarthritis, but not rheumatoid. What type of arthritis do you have? Can you go back to your doctor? Obviously you are in pain…which needs to be addressed. I hope you can find a good doctor nearby who can help you with medication to ease the pain.
I have been on Enbrel for over a year and pain still persists. My rheumy prescribed a pain patch, but my insurance wouldn’t pay. The insurance told them that I had to be on Morphine and have it not work before I could get the patch. Which didn’t make any sense to me. Why would it be better to ingest something than put a patch on that could be removed??? My rheumy would not prescribe Morphine, so I called my family doctor and she said she would go ahead and prescribe the Morphine. I tried the Morphine and as both my doctor and I knew already the Morphine didn’t work. I called my rheumy and she wouldn’t go ahead with the patch…she said that my family doctor should go ahead and write the prescription for the patch…Did I miss something here??? She wanted to prescribe the patch but wouldn’t jump through the hoops that the insurance company, the family doctor helped out and then I end up with nothing….oh yeah, PAIN!
That makes no sense whatsoever, Claudia! So what else is new, eh? I can’t understand your rheumy’s logic – did you family doctor prescribe the pain patch? Doctors are so afraid of prescribing heavy duty pain meds…but we have heavy duty pain, and need some relief. I hope you have something that works, even if only a little.
I get the impression that rheumies feel that getting the disease under control is their functon and they seem reluctant to treat pain. Mine prescribed Darvon for pain and that is off the market now. It had some morphine in it but was described as not much better than a placebo. My GP is the one I look to for pain control.
I feel much better when I take painkillers but don’t actually need them to function usually. Since I expect to live a long time I will leave it that way for now.
Are you taking calcium and vitamin D? I think that everyone taking pred ought to with the bone risks that come with it. All the best. You are certainly thorough in your approach
Hi Annette, yes I take vitamin D. And calcium sometimes. I should probably take more, but I try to get plenty of calcium from my diet. When I am on prednisone, I am capable of doing light weight training in the gym, which should also keep my bones strong. The irony of prednisone 🙂
I also take daily pain killers – endone. But I need much less of the stuff to function on pred. You’re so right – rheumies don’t like to prescribe pain meds. It’s like it’s a personal failure on their behalf if, after all they’ve tried, you still need pain meds. Some of us just don’t respond to any of the current treatments. I think the stat is about 30%. I also get my pain meds from my GP, prior to the pain clinic. Thank the gods for caring GPs!
Take care and thanks for contributing to the blog.
Thanks for the Blog. It is indeed informative. I think Vitamin D or calcium would help, but that’s just the basic, does not cure it all. You need to go where they use clinically approved mathods and therapies to make you feel completely pain free forever.
WOW…as I was reading this post, I almost fell off my chair! I am 31yo and last year started developing severe pain in random joints..I had seen a Orthopedic and he looked me over from head to toe….said I definately had inflammation but it was not caused by injury….something cronic. Headed to my family dr. and she did routine bloodwork. She referred me to a rheum. I saw him and he tested me more for Lupus, Lyme and RA. I came back seronegative. He contunied to scratch his head, offered my cortisone shots and Umtram & prednisone. Prednisone helped…but not 100%. He proceeded to tell me I was depressed! Well of course I was depressed! I am a 31 active female with a 2 year old at home and working full time…I had to crawl down the steps in the morning!
I finally found another rhem. and just love him. He said “in easy terms” I have a seronegative RA. BUT…it is my immune system attacking my tendons where it meets my joints. He put me back on prednisone long term and started an immune supressant. Sulfasalazine….I was on it for 3 months and did have “slight” relief but was ready to try something else…..
Needless to say…2 weeks before my follow up appointment to switch meds…I find out I am preganant….which in turn puts me in remission! I still have some pain but can’t believe the difference. It is a relief to know we are on the right track with the immune supressant (since that tech what pregnancy does to your body). If I am super lucky, I could go into long term remission. If not,..I am really concerned I am going to come out of this pregnancy with not medication that I know will help. I can’t imagine caring for a 3yo and a newborn and heading back to work in the pain I was in.
Good luck to everyone out there suffering from these cruel disorders!
Kristy, that’s wonderful that you’re in a pregnancy induced remission…and congratulations!!! I can understand your fear tho…its just not realistic to expect the remission to last far beyond the birth. But, for some people it does…so I truly hope you are one of the lucky ones. I am sero-negative also, and it does make it so much harder for doctors to take you seriously. Depresssion!!! Yes, but its a secondary condition, NOT the primary problem! At least you know that prednisone helps some…it may take some time but you will find something that helps. The problem being that they are such slow acting drugs. The waiting to see if a drug is working is the hardest part. But there are plenty of options to try! You will find something, stay positive and I hope you have a wonderful pregancy, birth and baby. Keep us posted!!! And best of luck.
[…] by admin on June 17, 2014 · 0 comments […]
I’ve just discovered this awesome blog. It’s great to know 1. I’m not alone in this journey.
2. I’m not imagining the symptoms and pain as I’ve been told.
3. There is some relief along the way.
I’ve complained to my gp for years about constant joint and muscle pain. Had X rays on nearly every joint and nothing had shown. I was referred to a rhuemy after markers for lupus showed up. After hearing my family history he said he thinks I have seronegative RA. He prescribed huge doses of steroids which made me feel 21 again. Unfortunately I had to change specialists. 3 years on I’ve managed to get into my original specialist. He can’t believe I haven’t been put on biologicals yet. Fingers crossed I start next month. After taking the highest doses of metho, plaquenil and sulzapine I’m still in extreme pain.