Newly diagnosed and so many concerns

Symptoms & Treatments
1

Hi

I have been recently diagnosed with Psoriatic arthritis and due to start taking sulphaselazine .

I suppose im looking for reassurance before I commit to starting medication, as I worry ( maybe denial ) that they might have it wrong and it could be coincidences. This may sound daft and I’m not sure how I ended up thinking this way to be honest.

About a year and a half ago I had a pain in my right hip appear whilst I was jogging and also I developed what I thought was plantar fasciitis at the same time.

These reappear periodically but the hip is a more of a constant now, varying degrees of pain when walking ( I have been xray and there was nothing wrong and no osteo they could see)

In the last year my fingers started to on the odd occasion to be painfull at the ends and started to feel tight.

A few months back after one finger had been hurting a lot it ,all of a sudden ballooned to half the size again, I couldn’t move it and it was very painful, the after a day and a half it reduced over an hour or two, it is still slightly larger than my other.

Generally most of my fingers now ache and feel awkward to move and work with, the pain varies but its mostly a constant discomfort when using or waking up in the morning. ( I drop things constantly)

Also the finger the ballooned up is now bending inwards , not drastically but noticeably.

I sometimes feel like I might be getting a cramp in my calf muscles and arms but this is very intermittent and I haven’t had cramps.

My nails always had lines going down them but in the last year indents/grooves from left to right have appeard quite prominently in at least two nails on one hand. ( hands were xray and no sign of osteo )

I do tend to ache and need time to stretch in the mornings but im usually ok after a few minutes.

I have over years had the odd patch of dry skin on my elbows which could loosely be framed as psoriasis but dealt with quickly with hydrocortisone cream.

My blood were taken and I think I remember one of the results being at 2 , they classed this as normal.

When I saw the rheumatologist I was given an appointment to see a nurse specialist about medication, I also had depo injection which helped a bit .

I have found taking ibuprofen and codeine is most effective for hip pain. Ibuprofen on its own also works about 80%

I often use phorpain gel 10% on my hands as it seems to be more than just the fingers now , my wrists seem to be starting too.

My toes on one foot often feel like they freeze ( a bit like cramp) again this is periodically.

I do get a lot of tummy pains , but I had my gall bladder removed so put it down to that.

The pain doesn’t seem to move around from place to place as I have heard it does, it is variable and comes and goes during the day but always in the same places.

I don’t want to deny myself medication when I need it , but ive rebooked my nurse specialist appointment already , I looked up sulphaselazine and of course read all the horror stories, then become overwhelmed with the diagnosis , medication and postponed starting meds.

I used a patient forum 4 yrs ago when I had hyperthyroidism , it was the best thing I did, so I thought id do it again.

Any responses , advice , thoughts would be welcome and appreciated.

Debbie x

2

Hi Debbie! Welcome to the group! What you describe sounds pretty familiar.

For any medication you can find the horror stories. But not treating the disease can be really bad. Even if the diagnosis of psoriatic arthritis is not correct and it is a different inflammatory arthritis, the treatment is the same. The only way to know if a med will work with minimal side effects is to try it.

Personally, I’ve been on a whole bunch of different NSAIDs, a few different disease modifying drugs, and one biologic. I have not had many side effects and they were mostly manageable. Having personally seen what untreated PsA can look like with my mother, I can manage some side effects. And my mom was lucky, that it was primarily just get hands.

3

Thank you for replying Stoney and to seenie for connecting and responding later.

that sounds a very rational way to think about it ,as i said im not sure how i have got in to this way of thinking , not like me at all, i usually do as im told :-)

i wll read and absorb later and i feel a phone call to nurse pescriber might be on th e horizon.

as i was writing it out i did think to my self are you stupid this sound slike its PS a why are you doubting.

but hey ho , were humans

thanks again fro the response x

4

Hi there Debbie, and welcome. First of all, what you tell all sounds totally familiar to me too – not only your symptoms, but also your doubts, fears, feeling overwhelmed, and worries. Our Newbies’ Guide has lots of material that you will relate to.



Yes, you’re right: it could all be coincidence. I had a GP who was convinced that my assorted symptoms were strange coincidences, and that view delayed my diagnosis by many years. During that time, I doubted and feard as well, but I also felt that I needed to trust my doctor because, after all, she’s a doctor and I’m not. In my case, the price of that delay was deep and prolonged depression, a reluctant early retirement, joint destruction, multiple joint replacements, and permanent mobility problems. And I am not the only person with PsA who has suffered this kind of permanent damage. You are one lucky person to have a diagnosis and a treatment plan.



You are NOT stupid for doubting and fearing! Of course, sulfasalazine stories sound scary. So do aspirin stories and penicillin stories. But the only treatments which are proven to prevent joint destruction are the ones which your rheumatologist can prescribe. And really, if SSZ disagrees with you, you stop it and move on until you find another DMARD (Disease Modifying Anti-Rheumatic Drug) which doesn’t cause you distress, and which helps your disease. In my case, I cycled through all four of the major DMARDs without any unbearable side effects. They didn’t work either, but that’s another story! The trouble with this disease is that it can be mild and annoying or severe and highly destructive. It can also be mild and then suddenly gather momentum. And you don’t know where you’re going with it until you are there, and at that point it might be too late.



We’re glad that you found us, even if it’s too bad that you have PsA as well. But the good news is that we’re here to listen and support you, as well as share our information bank with you. And we love discussions. Dive right in!

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thank you , thats very honest of you.

I secretly think I knew what the responses would be , and your absolutely right , I now consider myslef lucky to be diagnosed with a treatment plan in place and ready to go.

with two responses I think I have realise what I should do.

you sound like you have had a rough time, sorry to hear that , from that though you were able to advise me and no doubt others. every cloud !!!

These forums are invaluable and ill be sticking around a while i think

Thank you and best wishes

Deb

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PS Your “normal” blood work is, um, normal. :slight_smile: Something like fifty percent of PsA patients have inflammation markers in the normal range. That’s one of the things that makes diagnosis of this disease so difficult, and why my GP didn’t think that anything was much amiss with me except for my persistently abnormal obsessions with my (imagined?) aches and pains. But I digress. In our Newbies’ Guide, there’s an article about inflammation markers:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/inflammatory-markers-in-psa
By the way, the book that is mentioned in that article is well worth getting.

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Thanks serine , I will check it out later .
That’s good to know about the markets ,
Thanks again
Debbie :smiling_face::smiling_face:



Seenie said:

PS Your “normal” blood work is, um, normal. :slight_smile: Something like fifty percent of PsA patients have inflammation markers in the normal range. That’s one of the things that makes diagnosis of this disease so difficult, and why my GP didn’t think that anything was much amiss with me except for my persistently abnormal obsessions with my (imagined?) aches and pains. But I digress. In our Newbies’ Guide, there’s an article about inflammation markers:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/inflammato…

By the way, the book that is mentioned in that article is well worth getting.

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Hi Debbie, I have nothing new to add to what Stoney and Seenie have already said ... oh, except I'm in the UK too ;) .... but I was pretty quick to a diagnosis some six months or so after my symptoms started and got straight on to DMARDS and then started my biologic journey a while after that. For me the DMARDS were tough but unfortunately in the UK you have to go through two of them before you hit the biologics .... but I want to put this into perspective, I have a whole list of medications that I can't be given so it's likely more 'me' than the 'meds'.

As much as you can read the horror stories .... and people love telling everyone about what goes wrong, what goes right isn't anywhere near as juiceylicious reading or regaling. And for alot of people here and elsewhere the DMARDS are just fine. And if they aren't most problems resolve as soon as you stop taking them. My advice with sulfasalazine is to drink at least 500ml of water/juice/cordial whatever is your preference with each dose and a good quantity in between, it's your best protection against side effects.

I'm still scared of this disease even four years down the line. Still worry whether this is 'really' what is wrong with me and stress every new ache or pain. I figure this goes with the territory :-). We're all here to help and support eachother.

Glad to have you join us.

9

Hi there,

I don't know what's happened to me lately, but over the last few months I've stopped questioning whether I've got PsA or believing that it has gone away every time I have a good day or a good 10 minutes. And I was diagnosed over 3 years ago!

10

Yes Deb, I’ve had a hard time, but so have a lot of other people. During the worst period of my disease, though, I wasn’t trying to juggle work and kids, because I was already retired. That was one good thing. I was also very fortunate to find an outstanding rheumatologist who got me on the road to feeling better, and in whom I have infinite faith.
This site means a great deal to me: it gives me contact with many people all over the world, and sometimes I get the opportunity to help or to guide them in small ways. That does me a lot of good. Many days, I think I need LWPsA more than it needs me!

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Trust me, Seenie, it (we) needs you!

Hi Debbie! I don't have the inflammation markers in my blood, either. Also, that tight feeling in your hands was one of my big complaints, too. I'd be constantly trying to flex my fingers and spread them apart. And my fingers always felt like they were being crushed! Same with my toes. In my case, things just kept gradually getting worse, and pain/stiffness was in a lot of my joints.

I opted out of Sulfasalazine because my rheumy told me it was "glorified aspirin". I can't handle anything that's hard on the stomach.

I'm not saying your PsA will get worse, but mine did. I kept trying to tough it out, but the constant increasing pain basically overtook me. Eventually I agreed to going on Enbrel, which has made a huge difference in how I feel.

Just wanted to let you know your symptoms sound familiar, and if not PsA, what are they? I was very afraid of the meds--afraid of of everything from side effects to the cost to the possibility that a biologic wouldn't work anyway, and then what would I do. Well, taking Enbrel has helped so much that I would never hesitate to encourage others to go on a biologic if their doctor recommended it.

I hope you get the meds that help you!

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Hi Debbie, just to pick up on something Grandma J says about sulfasalazine ...... I'm guessing what her rheumy meant with the 'glorified aspirin' comment is that for some people it can be a bit tough on your stomach. I'm sure it's the same elsewhere but here in the UK you start on a dose of one pill a day and gradually increase over the course of four weeks up to the therapeutic dose. This gives your body chance to get used to it and minimise ALL side effects. As I said before, just take it with lots of liquid and after food, as the pharmacy label will tell you, and you're most likely going to be fine.

But if anything crops up which worries you feel free to let us know and those of us who have taken it can chip in with some support to say 'yeah, me too' or 'nay, not had that one'.

Although these days it is used extensively as a DMARD it is actually a sulfonamide antibiotic. Lots of people get good results with it.

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I couldn't take Sulfa as it made me really ill...I was also ruled out from Methotrexate as I was having adverse liver function tests. After a lot of humming and harring I was eventually put on Enbrel injections which worked very well initially but seem to be losing their effectivness now.

My Consultant is a nice man but I get along best with the Specialist Nurse who is a lot more down to earth. She told me that the Consultant is only concerned with preventing my joints getting any worse and not with pain managment, the psoriasis or my mental health issues I have (depression not helped by constant pain). Hence I have to get my pain meds from my GP and am currently on 100mg of morphine a day. It doesn't really work but it's better than nowt.

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hi. Welcome! I feel like we share the same story. I have tried sulfer in conjunction with methatrexiate for a very long time. Like many arthritis drugs it could cause long term damage if not monitored. My biggest downfall was the immune system… it took a total downhill turn with every new drug i tried, Enbrel may be another suggestion for you if suler and metha dont work.

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MrB401 said:
hi. Welcome! I feel like we share the same story. I have tried sulfer in conjunction with methatrexiate for a very long time. Like many arthritis drugs it could cause long term damage if not monitored. My biggest downfall was the immune system.. it took a total downhill turn with every new drug i tried, Enbrel may be another suggestion for you if suler and metha dont work.
16

Thanks for your reply . I started sulfa a few weeks ago , week one I got an infection in throat, go reckoned it was coincidental .
I have just started 2 a day today so will hope and see how it goes .
I have also seen a real improvement in tummy pains which I wasn’t expecting .
I’m really hoping this works .
Was your immune system an issue befor starting you’re regime . ??
It’s sounds a long journey you’ve been on so far . I hope it improves .
It’s a big decision taking on this treatment and the journey ahead sounds very varied for everyone . I hold on to the idea that no treatment is by far a worse option .