Difficulty getting fully diagnosed with mild symptoms

RAINYDAYS 

I have PsA diagnosed and most of the problem is an overactive immune system that makes the turnaround of skin growth a problem and also some damage to joints and tendons.

I also suffer a depression that in part drives me up the wall. When they do get that diagnosis you will be introduced to  DEMARD MEDICATIONS and TNF medicationS that part controls the immune  system.

Good luck

BOB

BOB

My feeling on this getting a name for what you have is not as important as getting a treatment to help you feel better. I had fatigue and weakness with OA in both my thumbs. I was 60 so I got a lot of the Lise weight and get exercise. I had low Vit. D so I started on 2000 then 5000 a day and felt much better. The weakness continued then hip pain came along...I was taking 1300mg extended release acetaminophen AND 600mg ibuprofen twice a day to function. I had an X-ray that showed sclerosis in my SI joint. A year ago the rash started, weird looking on my upper chest and sides of my arms... not functioning again I told my Dr I could not live like this anymore. I tried Pt( no help) the a young Chiropracter worked on my  low back with no lasting relief. He finally said he thought something else ( polymyalgia?) must be going on... I found two small patches of plaque on my elbows and my knuckles were red and patchy. I told my Dr I needed testing which showed up Sed Rate mildly elevated, but my hsCRP was 6xnormal. Dr still denied something was wrong and I flipped... I said put me on prednisone at least!!! So I got 10mg a day( felt like heaven!) and got appointment with an old school rheum. Who immediately started me on MTX 15mg....felt better for awhile then still not functioning by September I got on Humira and life is new and mood is MUCH better. So takeaway : get med that works, hang in there, and realize these conditions are very complicated to diagnose...In a Physician Assistant and I went through all this... and by the way I’m now diagnosed wit Ankylosing spondylitis-psoriatic arthritis type....

You have my sympathy! Achieving a diagnosis for PsA is not easy as there are no positive tests that say yes psoriatic arthritis! Its quite possible to have PsA and show none of the inflammation markers. But it sounds as if you're on your way to a diagnosis and most importantly treatment. Later in the progression of my PsA I developed inflammation in my jaw but no sign in the blood tests...took ages to get a scan to show it! To begin with my fingers were quite badly swollen (dactylitis) with no  elevated CRP or ESR but they were so typical of the disease it was unmistakable.

The recommended strategy these days (See NICE and Arthritis Research UK) is early and aggressive treatment to obtain the best results. There's a stage in the process of being diagnosed and receiving treatment that is one of struggling through a mind fog. Dont worry it will go away and you will get your head round what is happening to you. 

I cant disguise the fact that getting the right drug and dose is a protracted process within the NHS. (You are in the UK?)In some ways we're all our own guinea pigs as what works for one person may not work for another. Some people are luckier than others and have an instant response to a drug. Others dont and need patience at a time when you're probably screaming (inside your head) with frustration.

And yes fatigue is a very real issue with PsA so treat yourself gently during this period! Inflammation whether it shows up in the blood or not creates fatigue. Matters will get better once you start treatment. Are you taking any anti-inflammatories (NSAIDS) yet? GP can start these and some pain killers even if its only paracetamol.

Do you know anything about pain pacing? I broke a T7 vertebra and was referred to a pain therapist but I used the pain pacing techniques taught to me mostly for coping with PsA. Try looking up Moodjuice offered by the Scottish NHS in Google. I'd be surprised if this does not help.

Yes PsA sufferers can get depressed. Depending on the severity of the disease, getting to grips with the potential changes in lifestyle and work necessary to cope can be difficult. Walking was a major part of my social life as well as skiing. Both had to go initially but I'm now back walking up to 2.5/3 hours. A distinct improvement on before. 

Talking to people who understand such as those on the forum is important to coming to terms with the disease. Other people just don't retain the significance of an inflammatory arthritis opposed to osteoarthritis not appreciating the difference. Its a lot simpler to come here or one of the other forums and have a good rant/wail or simply ask questions. You're not alone anymore....

Thinking of you...rest up as much as possible and dont whatever you do go at things like a bull in a china shop! As said earlier treat yourself gently... 

Hello

I was reading your post so I dont now if this will help or not. IM not a DR but it sounds like you have PSA. I had psoriasis as a child. But when I was 27 I noticed a toe was always swollen and didnt know what was wrong. I went to a DR he took x rays and gives me this look like you have some problems. At the time I didnt have really any pain but in that one toe. I thought this Dr is nuts. He told me you have PSA. Well a year later all my toes started deforming slowly and I had pain in my feet. Im now 46 had 2 surgeries on my toes to make them straight and still in pain. But I havnent taken the medications that can prevent the damage like humira. I will tell you I tried Methotrexate but it made me really sick. Im thinking your younger than me and this could be the beginning but im not a DR. Just everything your saying sounds like me at the beginning. If it is the best advice I can give is take something so you dont get inflamed thats when the damage is being done. Dont be like me look into the medications that can help you with inflammation. I did have two foot surgeries one was a disaster but the other one for anyone who has will say twisted toes foot fusion is very good to straighten out the toes and I promise only pain for one day and the two toes I got done are still straight from 8 years ago. OH I took many blood tests and everything always came out fine so not sure if you can trust blood tests. I think that ultrasound will give you good information. Let me know Jen

Hi Rainydays,

Sounds like a frustrating situation. Mild PsA is notoriously difficult to definitively diagnose due to the lack of biomarkers. And in truth, most treatment recommendations and guidelines still call for the use of NSAIDs, rather than DMARDs, for mild disease. So if a rheumatologist isn't going to prescribe anything that would possibly change the disease path (because s/he does not evaluate the PsA to be active enough to justify stronger, more riskier medication), then just having a diagnosis might be a mental weight off your mind but might not grant you access to more aggressive treatment (if that's what you're looking for). The scientific community still seems to be of divided opinion on what percent of PsA progresses to radiographically visible joint damage, though I would guess that it's higher than current estimates claim. Do you have the option of going to a PsA clinic or a consultant privately? It's possible to try to get a diagnosis privately and then get treatment within the NHS...

Hey  

I really think you have PSA everything your saying sounds like it. Let me know about the ultrasound. If you ever want to write my e mail address is

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