Normal Bloods, No official diagnosis, feeling lost :-(

Basicquestions12

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.

moderator

Hi Basicquestions12,

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

SusiM

Hi and welcome to the club that you dont really want to belong to,

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!

dreamdaisy

If a rheumatologist has confirmed it is some kind of auto-immune arthritis then the chances are that is what it is. There are around three hundred auto-immune inflammatory conditions so narrowing it down can be tricky. I wasn't accurately labelled for nine years but once I was it made no difference whatsoever to the treatment I was receiving.

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

Basicquestions12

Thanks for all the replies everyone , it’s comforting to hear from people that can relate to my situation.

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.

stickywicket

I agree with the others. Inflammatory arthritis of any kind is a wily old beast and doesn't always present us with neat categories. There are quite a few sero-negative types including, sometimes, RA. I'd strongly urge you to take methotrexate if the rheumatologist has offered it. That will you'll avoid all the nastier add-ons. It wasn't on offer when I was first diagnosed back in the dark Arthritic Ages and, as a result, virtually all my joints are badly deformed.

dreamdaisy

Oddly I don't want it either but thanks to defective genes I have what I have and see no reason why others shouldn't. Good health is not a choice, it's a bonus which no-one appreciates until they lose it. I'm lucky in that I've never had it. I worked for seventeen years despite the worsening of the disease and decided not to have children as there is no need to potentially blight the lives of future generations. Life is supposed to be enjoyed, not endured.

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

Basicquestions12

Thanks for your replies once again, I really appreciate it.

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 😒

trepolpen

we are not experts like your consultants , you dont need to have rheumatiod factor to have rheumatiod arthritis & if you suffer with Psoriasis you can get Psoriatic arthritis

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

kathleenT

When I was first diagnosed in 1987, I had no RF factor and was seronegative right until 2014 when I suddenly became seropositive. I already had Sjogren's Syndrome but with now being seropositive, that has become much worse, and I also have Rheumatoid Vasculitis! So not only is RA a wily old beast, it's also very canny in what it does or does not do. Sulphasalazine was my first DMARD and I loved it. After 1 week I was walking normally instead of creeping along, and my 'bunches of bananas' turned back into hands again. but now, I get on reasonably well with MTX, Leflunomide alongside Rituximab and Pred (for the vasculitis) It's my Osteoporosis and Osteoarthritis that's killing me!!!!

dreamdaisy

Sulph did nothing for me but a friend has had his PsA wonderfully controlled for over ten years. He has minimum joint damage and no OA (talk about pulling the long straw). He has no comprehension of my experience of arthritis and I have none about his. His life has carried on a it always did which must be nice. He has never bothered to find a forum because his experience is, to him, how everyone's arthritis goes.

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

stellabean

Hi Basicquestions12 I was diagnosed with RA last year I already had OA in many joints spinal degeneration since I was 40 and crohns since I was young. My bloods were not normal but not outrageously bad. I was on MXT for about 6 months but had a terrible time of it as my last bloods in April were normal the locum rhumey decided I was in remission and said I didn't need any more drugs at the moment. My joints are still painful and some swell periodically. I can understand your reluctance but you really do not want to risk damage to your joints as there is no going back.
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

Basicquestions12

Thanks for all the replies , I’m really honored that you’ve all shared your experiences and stories with me.

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.

dreamdaisy

I did not have any blood tests for five years because my then GP was ignorant about auto-immune arthritis. When I had my first ones my inflammation markers were very high and it was only in one knee. Said knee ended up being 27" in circumference before any action was taken.

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

SusiM

I understand your reluctance about wanting to take the meds. Ive been put on a mild one -plaquenil (hydro-something? ). While its given me no side effects its also not working for me so lm assuming at my next appointment my meds will be changed. Arrgghh it takes so long for them to work and lm worried about side effects as l tend to be quite sensitive to drugs. I dont like the idea of taking tgese strong meds but l like the idea of deformity even less. My rheum is puzzled about my condition because my bloods are near normal but my symptoms are stand out. Yoirs is even less obvious being in one knee. But you mentioned having injections in both knees so it would be very coincidental that its not an inflammotory condition having affected both knees. I can relate to all your concerns about taking these potent meds but at the end of the day all l can do is put my faith in the docs and hope they know what theyre doing.

Basicquestions12

Thanks again for the replies.

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.

dreamdaisy

And that's the proof that the arcoxia (which, if I remember correctly, is an NSAID) is not cutting the arthritis mustard which is why the next step is required to bring disease activity under control. Arcoxia is a Non-Steroidal Anti-Inflammatory Drug, as is Susiem's hydroxy, but neither addresses the main issue, the over-active immune system. The DMARDs are the Disease-Modifying-Anti-Rheumatic Drugs which do. You are both at the stage where, with a bit of luck and a following wind, you may only need the one DMARD to be effective enough, the longer you delay the more likely it is you will need more than one medication. At one point I was on three for a few years but as it was always too little too late I am now on the big guns which means I am down to two.

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

Basicquestions12

Thank you dreamdaisy , hopefully tomorrow’s appointment goes okay anyway. It’s just the uncertainty that’s worrying me. Thanks again.

dreamdaisy

Please let us know how you get on. DD

stickywicket

dreamdaisy wrote:

Arcoxia is a Non-Steroidal Anti-Inflammatory Drug, as is Susiem's hydroxy,

Sorry to butt in, DD but I should point out that hydroxy is a DMARD not an NSAID.

dreamdaisy

Thank you, it felt wrong as I typed it but couldn't work out why! Fibro fog I guess. :roll: DD

pinkteapot

I had normal bloods pre-diagnosis. I'm pretty sure I only got diagnosed with psoriatic arthritis because I have psoriasis. Not sure there was any other basis for deciding it was that particular form of auto-immune arthritis!

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. And remember that the millions of people worldwide taking a drug with no problems don't tend to post online. It's those who have problems, and particularly extreme ones, who tell their stories.

Basicquestions12

Hello again,

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.

PrincessCupcake

Hi there
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

stickywicket

I can't really advise. I have never had any problems with meth and I was unable to work before I started taking it so it made no difference. I do, occasionally, get a 'very tired' day either the day after I take it or the day after that. That's all. It does a good job.

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.

dreamdaisy

I don't think I can help much either. I decided not to have children because I did not want to pass the dross on to another unsuspecting generation, a no-brainer. I took meth tablets, developed a rash which didn't bother me in the slightest but my rheumatologist took me off them immediately. I now do it by injection and have no problems with that, it has to be done to control disease activity so I get on and do it. I occasionally feel extra tired for a day or so after the injection but that is all. I have depression, caused by the ongoing pain thanks to the disease so I take a small daily dose of an anti-depressant to deal with that. I worked for seventeen years but was fortunate to be self-employed so as I worsened I could tailor things to suit me.

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