Hello Everyone,
As the title may suggest I am frustrated because I have no official diagnosis and have been experiencing symptoms for a year and a half now. I’m 25 years and a female and started having swelling of one knee that would come and go every week. I initially went to a physio who then referred me to a gp , the gp referred for an mri, which showed extreme effusion. The gp thought it was a ligament injury so I then went to an orthopedic surgeon who ruled that out and said it seemed systemic.... Fast forward I’ve been seeing a rheumatologist for a year now... he said it’s inflammatory arthritis but I don’t fit in a particular category. All my bloods are normal.... I have refused methotrexate but do take arcoxia almost daily. I also tried steroids but I soon relapsed again.
I just wanted to hear if anyone with a similar experience and if they ever received a diagnosis. I see the rheumotolgist on Monday , but I just feel like it seems it’s in my head as my bloods are always normal.
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Welcome to the forum! I am sorry to hear you are having such a difficult time, I understand it is very frustrating. Not having a diagnosis can sometimes make people worry and feel uneasy, especially when medical investigations ask more questions than they answer.
You have definitely come to the right place, I am sure our members will soon jump in and share their experiences. Also, there is always our Helpline team who are available if you want to talk to someone.
Helpline: 0800 520 0520 (9am - 8pm, Monday - Friday).
Hopefully your your appointment on Monday helps shed some more light. In the meantime I have attached some links with information on Inflammatory Arthritis and treatment options which you may find useful.
https://www.versusarthritis.org/about-arthritis/treatments/the-inflammatory-arthritis-pathway/
https://www.versusarthritis.org/about-arthritis/treatments/
Please take a look around the boards & join in anyway you feel comfortable.
Best Wishes,
Alice
I was diagnosed 2 months ago and like you they dont know what type of arthritis l have. My inflammotory markers were near normal so its difficult for them to diagnose me. However my symptoms are joint pain on many parts of both sides of my body so l think that was enough to suggest l have an inflammotory condition. They also trialed me on steroids (which worked for me) so that helped them conclude that it most likely is inflammotory arthritis. Theyre still not 100% sure but l am on dmards so its being treated like it is. So far though tge meds have done little to nothing.
It must have been a frustrating year and half for you. Being just in your knee thats why it must be difficult to diagnose. I have other things going on which l cant get a diagnosis for so l understand the frustration and mean while yoir in pain and nothing is being done for it.
Hang in there and lm sure they will come to a conclusion. Good luck!
I began back in 1997 when I was 37, no-one medical recognised my very swollen left knee for what it was and I ended up being bounced between orthopaedics and rheumatology which wasted the whole of 2001. I began my first DMARD in February 2002 but by then it was too little too late and I am in a right old pickle now.
At their worst my inflammatory markers were in the 160s and 170s but I have never had a positive rheumatoid factor which I think was the stumbling block for people who thought there were only two kinds of arthritis (I include in that number the first rheumatologist who turned me away. Twonk.) As it turned out I have psoriatic arthritis which is a sero-negative kind and in my case did not begin as it usually does. It could be that you have one of these types too but I am not a doc, just a practicing patient. DD
I also forgot to mention I’ve had two steroid injections in the knee , the first was in August and I was in remission until February. Then March I had another injection , but it was only effective for less than two weeks :-(. I feel I’m in a dilemma as I’m seeing the consultant Monday because he’s monitoring me because I relapsed. He said his next move would be high dose steroids for one month ,which I’m not sure I’m comfortable with either. Same time I’m needing to take 90mg Arcoxia daily , which I don’t know is healthy longterm either , but I must stress all my bloods were perfect , so maybe it is okay?
I’m just frustrated because although I don’t want to have any condition like this , I feel I would accept it better if my bloods reflected what I was experiencing , because otherwise I can’t accept any of these harsh DMARD’s as options. Its also a great concern for me as I have had children yet, and I’m only starting my career.
I'm not sure what's worrying you about the DMARDs because they are as nowhere as bad as untreated auto-immune arthritis, the horrific joint deformities are now, thankfully, increasingly a thing of the past thanks to the development of the meds. Although I have also developed osteoarthritis as a result of the untreated psoriatic arthritis my joints are minimally deformed which is a good thing. I now stand out at rheumatology as being the one with walking aids, every one younger than me is fully mobile as I used to be before it began.
Steroids are lovely when they work but all they do is disguise the trouble. They also affect the whole body by thinning every tissue so bring their own dangers. I never had any relief from the injections into my knees but one for the OA in my right ankle was effective for three months then it all came back. Woo-hoo. No point then, no point now.
Auto- immune arthritis is not curable, merely controllable. My OA is reasonably well behaved at the moment and the PsA s in remission but can't tell. My PsA affected joints still hurt, viz. my toes, fingers, knees and they always will. Time for some more pain dullers as I've had a busy morning. DD
My main reason for denying DMARDS is because my bloods are all so good , including my inflammatory markers. If my bloods were all over the place I’d accept treatment even reluctantly. My gp is of the opinion that it’s a reactive arthritis and that it will burn itself out in due course , but the rheumatologist isn’t convinced it’s that as he said it would be nearing the end of its clinical course. I just don’t want to put toxins in my body for a condition that may go away. I completely respect however people who need to be on the medications as i know how debilitating it is with only one joint impaired....
I’ve been looking at the medication sulfasalazine and wanted to hear peoples experiences of it? What side effects did you experience? Were you able to work? Could you get pregnant on it and were your children healthy?
I’m only asking as it seems a less harsh drug compared to methotrexate. The rheumatologist said if I were to go on methotrexate I’ll need to be on it 2/3 years before coming off it, so I was hoping if I ask for the drug sulfasalazine I could try wean off it after 6 months and see If I’ve gone into remission.
Sorry for all the questions , I just feel nobody really understands my dilemma , even doctors 😒
alot of people dont get any side effecys with the drugs like methotrexate which I took for 18 years & sulfasalazine which I have taken since 1996
if you have one of these auto-immune arthritis you want to protect your joints , they can get damaged very quickley but talk to your consultant , write a list of questions , over the years you will see alot of them & need to build a relationship & trust them
― Louisa May Alcott, Little Women
I have had wonderful blood test results and felt the worst I have in ages, other times I have been feeling the best in ages and my bloods have been dire. Occasionally things collide as they should but auto-immune arthritis is not a game player, more a game-changer. DD
I forgot to mention that my spinal damage and OA were only discovered when I was assaulted in 1999 and had a scan I had been oblivious to it until then now it never lets me forget it is there.SB
I’ve still got a lot of thinking to do and kind of dreading the appointment on Monday. I’ll bring up the topic of taking sulfasalazine for a trial of 6 months , and pros and cons compared to methotrexate. I’m just worried because I don’t know if I could comply with a treatment if it made me feel sick or reduced my quality of life with side effects. I already couldn’t tolerate naproxen for that reason as it made me feel sick to my stomach.
Did any of you have a similar experience with normal bloods and only one joint being inflamed ? I’m worried about other joints getting inflamed , but I know it must be a possibility if I don’t do treatment.
Any form of arthritis is progressive and degenerative. I have had side-effects from meds but only had to give up with one, leflunomide, because the headaches that caused were unbearable. Sulph gave me tinnitus (which I still have even though I don't take it any more) but it doesn't hurt, it's just a nuisance. My friend has not developed tinnitus. His arthritis has stayed in his hands and not spread.
I once said to my husband that arthritis is a case of mind over matter: I do mind but that doesn't matter. In all honesty our experiences are of little relevance to you because we are not you, do not have your physiology, some of us are years ahead of you in terms of living with the disease so are more badly affected. The younger ones who battled through pregnancy and are now trying to cope with motherhood plus a probable recurrence of the disease are too busy to post.
People who are doing well don't need a forum because they are living closer to their normal than someone like me. My 'normal' for 2019 is completely different to my normal of all the previous years thanks to my rate of progression and deterioration. I have no doubt that if my then GP had been able to recognise the symptoms of a swollen left knee, and if I hadn't been bounced between rheumatology and orthopaedics for over a year in 2000-2001 and if I had started the meds when I should things would be a damn sight different to how they are. None of the above happened so I am where I am. It is what it is, it will do what it will do. It is never going to go away and there is no cure. Personally
I find that makes it easier to deal with but having been very sickly as a child I am used to living a compromised life. If you are not then that makes it a far harder challenge. DD
It’s only the one that that’s swollen , but it’s extremely swollen. I had a cortisone injection in it last year July or August and that put me into remission until February this year. It’s unfortunately resisted the injection in March and continued to swell unless I take Arcoxia every day.
The operation to clear my left knee of five years' worth of solidified and fresh inflammation was bad enough to make it into the bone boys textbooks. I was finally referred to orthopaedics by the physios at the local football club: I consulted them a my thinking was it engine knew about knees they would. They knew enough to refer me which was far more than my GP had bothered to do.
Auto-immune arthritis is a powerfully destructive disease which needs mess with some welly to deal with it. You wouldn't go outside in a hurricane holding an umbrella and expect to remain dry. DD
Sorry to butt in, DD
I think in part due to the lack of interesting blood results, I went undiagnosed for a number of years. My first joint involved was a toe, and back then I was referred to a rheumy who decided straight away that it must just be a sports injury, so discharged me and the GP sent me for physio. I had six months of agonising physio on an actively inflamed foot, and a physio wondering why it kept getting better then worse again. :roll: A couple of years later I got diagnosed when more joints got involved.
I really do understand the anxiety that comes from a lack of diagnosis. All I can say to try to help is that from what I've experienced, my treatment for PsA seems exactly the same as for someone with RA, so in a sense it doesn't matter precisely which disease I have.
As for drugs, I've just posted on another thread that everyone reacts differently to everything. I had a really bad reaction to Sulfasalazine. The internet made me TERRIFIED of Methotrexate but it's been fine! Unfortunately, all you can do is try a drug and see what happens. It's not a fun process, but you will find one that's right for you.
Sorry for my absence for the last few weeks , but I have been reading the responses , and I’m very grateful. I saw the consultant and explains about taking daily anti inflammatories and paracetamol, and that the cortisone injection had unfortunately only worked for less than two weeks. Immediately he began talking about methotrexate, which I still wasn’t mentally ready to hear and refused. Fast forward to today I’m becoming to realize how disabled I’m becoming, and the weight I’m gaining from being unable to exercise like before. I contacted him again last week about starting methotrexate for a trail until April next year. I’m still waiting for the blood script etc to bring to my gp , but I’m really nervous about the whole process...
Can anyone advise how they coped and were they still able to work? I’m a shift worker so can choose days I work etc. also what kind of birth control options are there, as I’ve been advised to take the mini pill (progesterone only). Also for anyone with mental health issues do you feel methotrexate made things worse? I’ve struggled in the past , but only really feel comfortable talking to my gp about it not the Rheumotologist.
Sorry for all the questions , I’m just really uptight about the whole thing.
I am in exactly the same situation, except i haven't got to see a rheumatologist yet. I had blood test a few weeks ago and GP said they were fine. So it must be Osteoarthritis (that showed up in the MRI of my kneed) I have exactly the same symptoms as you described, my wrists and hands, my hip all painful and stiff. I have noticed recently that my thumb joint seems misshapen - the joint seems to be sticking out. I just don't know what to do next.
L
Sorry, I'm way past conception problems and I don't have mental health issues though I imagine it'd help rather than hinder by removing some of your physical problems.
At a recent meeting with my rheumatologist she suggested my trying amytryptaline or gabapentin to help me sleep better. More meds? No thanks, I know where I am with things and do not need more problems. DD