12 weeks into RA Medication, ESR and CRP now low, but don't feel any better

Hi Linda, Thanks for the encouragement I was heartened by your reply. I have aslo replied to several other message in this thread.

Hi Shazzy, I did not mention all that lead to my diagnosis. I have suffered joint pains for several years but rarely did they last more than a few days and would move around my body at random. One day in a thumb, another in a knee, occasionaly the wrist.  I would make an appointment to see a Doctor but on the day the pain had gone.  In one case I took photo's to show as evidence how my wrist was swollen because it had gone by the time I saw the doctor. The pain could be dire and I had many sleepless nights wishing I could cut off the offending joint. Ibroprufen gel helped a bit. The Doctor said I may have Paledromic Atheritis a precursor of RA but in his view the blood test result was a false positive. I have read that a feature of RA is that the joint pains are symetrical i.e. in both knees or ankles etc. certainly that is what I have now. For me, matters came to a head after many months of pain in the left ankle which was diagnosed as Gout. 'Allupurinal' and an arch support in my shoes helped after 12 weeks or so but in February 2014 all the symptoms described in my first post came on and I was refered to a Consultant Reumatologist. 

I am aware there are many alternate treatments and those with which the consultant is most familiar will be the ones prescribed. I understand it is cost sensitive given the fact that treatment  is for life. There are side effects, how an individual tolerates the treatment, also quality rather than quantity of life is perhaps an age related issue.

So as suggested by Connie perhaps keep a diary and take photo's to help the doctor understand your symptoms.

Good morning. Mine, too, is mirrored and has been for many years. I think after the back and sciatic pain, it was tennis elbow in both elbows and then pain in both feet and wrists. My hands both swelled to double one day and my gp simply laughed at me and said I must have used a different washing powder and sent me away. The same gp refused to send me to the stroke clinic declaring that i was too young at 39!  With the symptoms I insisted, as I had ended up speaking gobbledegook and could not read properly. So my appointment ended up being a week later. The lady i saw was furious with my gp and ordered a brain scan. I had had my first tia, but from the scan revealing white matter on both sides, she was adamant it was RA. My first rheumatologist dismissed it scowling as she said my bloods were negative and sent me away. I have continued to suffer random pains, like you, in my thumbs, fingers, then it will be somewhere on one of my legs and the joints are always on both sides. The hip pain is excrutiating and I have felt like downing all of my morphine with all of my co-codamol and tramadol just to stop the pain! My shoulders are now suffering. I wake several times during the night with numbness in my leg and hands and stiffness and pain in my elbows and pelvis. I have terrible sweating especially when I eat a meal, or try to do dishes, it drips from my head. I have nodules on my fingers, small at the moment, but a few years ago, one grew on my thumb, was there for ages, then disappeared just before my rheumatology appointment! My next rheumatologist said i had fibromyalgia, then on my follow up I saw a different guy, he said that i simply had arthritis in my hands, dismissed the pain everywhere else, not rheumatoid! I am sick of being ignored and my hext rheumatoid appt is next month. Last one was a few years ago. I have had injections in my hip that actually worked for three weeks, so I could do with another one. I am 46 and have suffered since an injury 22 years ago, since i was 24 and I am sick to death of suffering still. If I have no quality of life what is the point and until I get a proper diagnosis and treatment that will continue. I have looked up the rheumatologist I am due to see, apparently she specialises in ankylosing spondylitis.. I wonder whether she will be of any use to me?!its hurting my elbows now just bending them. I cant lift my arms up to put washing out, I struggle getting dressed and in and out of the bath, I struggle standing to cook, chopping food, doing dishes. I am depressed and have no interest in much at all and my dog is about to die. What is the point in going on?! 

Sorry -what a rant! I will shut up now

Hang in there Shazzy. Do confront the doctor when you see him/her and ask what you are supposed to do, OK the blood test doesn't show the problem but like me the symptoms exist, blood tests or not. So what can they offer. As I understand it there are meds for pain control and you seem to have them a plenty and other meds to control the disease/cause of the pain. So ask - what they can do to take the cause away? Indeed seek their opinion on what is the cause if not RA and what treatments could be tried to deal with it. But one thing I have learned there is no 'quick fix', keep moving, press the experts for a diagnosis and take the appropriate medication. Do try and stay positive, I hope it comes good for you in the end.     

Shazzy, you've had a horrible time and I'm not surprised your fed up of things. RA is usually diagnoised by your symptoms, blood tests that included specific ones for RA , X rays and some ultrasound or MRI.  I'd suggest you look at the NRAS website or their freephone number and find out more about how to get the best from your Rheumatologist appointments.

http://www.nras.org.uk/ help line and email available you don't need to be member.

Yes I do have a lot of pain meds, but they do very little and sometimes nothing. THE Only thing that has helped was prednisolone but gp only gave me one weeks supply then refused to give me any more until I see rheumy. I have been seeing so called specialists since all this started 22 years ago. I have cried in their offices, I have begged for some relief and have been offered nothing more than regular pain meds. Its beyond a joke now. I woke up in agony again at least 5 times during the night and getting comfortable is almost impossible. I wake with all of my joints screaming out in pain and numbness is some areas. I dont know how I am awake properly now. Some days I can feel positive, others its impossible x

Thank you, I will look that up. I have had an MrI on my brain which apparently WAS consistent with RA. This is why I am very confused. I have one on my back soon to try to find out why I am going numb and losing control of my bladder. Thanks again. I WIll check that site out x

Hmmmmm...stiffness in the muscles? I wonder if there's something else going on. Almost falling?

As someone who also has Hashimoto's [hypothyroidism], I don't see the thyroid drug as being responsible.

This was a board certified rheumatologist who diagnosed you? If not, see one.

Lynn, did I read somewhere that there seems to be some connection between Thyroid problems and RA ? Rhuemy's always seem to ask that question as part of diagnosis. Is that the same in the US ?

I was diagnosed with Hashimoto's, AS, RA, PsA....and a bunch of other diseases over twenty years ago. I've been researching my diseases for just about that length of time.

Hypothyroidism is VERY common. There is no proven link between it and RA or other arthritic disease. Far too many people with RA do NOT have thyroid disease. Just as far too many people with thyroid disease do NOT have RA. 

Yet, being diagnosed with both diseases is not unusual, which makes people think there must be a link.

Now, having said all that........

I believe that 20+ years from now we'll discover that there are 100+ different varieties of RA [which is why today  not one drug works for all patients]. And we'll discover that there are 20+ different varieties of Hashimoto's [which is why not one drug today works for all patients]. When they get down to that level of research then perhaps, just maybe, they'll find a link.

In the US rheumtologists don't specifically ask if you have thyroid issues. They do, however, upon the initial visit, get a full patient history.

 

Thanks for that. We have a full history taken too at  our initial appointment, si maybe its part of routine question's that are asked.

Thanks Connie, people with RA have spoken to me in fact a surprising number and I had no idea that they had the condition. Clearly the medication does work for them but all have had the disease for many years and cannot remember how long it took to get respite initially. They also describe flare up's which don't sound pleasant! I was told by the Consultant that the treatment took up to 12 weeks and I anticipated a steady improvement. As I said 12 weeks has passed with little improvement in the symptoms but I am somewhat relieved that you say it is probably a matter of time rather than something else. I have not kept a diary principally because I have bad days and worse days and nothing new since I started the medication. Your point about pictures is interesting, I did not mention the lead up to the diagnosis and will reply to another post about that.