New to Forum and PA

Kerig

Hi, Just thought I would take time to introduce myself to the Forum members and say how I was diagnosed with PA.

Have suffered with joint pain and sore scalp for several years now. Doctor said it was RO and gave me co-codamol (200 at a time on repeat prescription). Said scalp problem was exzema and gave me a lotion for this - alos on repeat prescription. Also had problems with eye going red for several years, again doctors just gave eye drops.

Last time they gave me drops had a reaction to them, as it was a Saturday when the reaction happened had to go local hospital - doctors not open on Saturday. Eye so bad they sent me straight to Birmingham Eye hospital where they diagnosed I had Acute Antenis Uvitis - spent 5 hours there whilst they tried to get the eye under control. They also made the connection with the joint problems and told me I had to be seen at the local eye clinic within 7 days or go back to them for the eye to be checked, also that I should be tested for RA and gave me a letter to take with me.

Had to go to my own doctor to get an appointment at the local eye clinic - he phoned there and then when he saw the letter from the Eye Hospital, in which they had suggested I be tested for RA, decided that maybe they should do some tests to see why I keep suffering with so much pain in my joints. Bear in mind have suffered with this pain in the joints for at least 10 years and been told it was sciatica and Osteo Arthritis and just given co-codamol to relieve pain, which has gotten worse. to the point where somedays I could hardly move at all.

Results came back to say had rheumatic tendencies or negatives or somthing !! So referred me to a Rhematologist who has now diagnosed psoriatic arthritis.

Was put on Prednisolone however they have not agreed with me and have been taken off after 7 weeks. GP said just to keep taking co-codamol till I see Rheumatologist again in January. Am also taking Naproxy as required.

If i had not gone to the Eye hospital no-one would have made the connection between all 3 conditions !!!

One of the main problem I have found over the years is fatigue, some days I am just so tired it takes me all my time to work - luckily I run my own small business from home. when I mentioned this to my doctor over the years they just seemed to ignore it.

Rheumatologist mentioned Methatrexate and Sulfasalazine and gave me information sheets on both to read before I see him again in January.

Yesterday my husband and I went on a 4 hour course run by our local hospital about RA and at least now my husband understands more about why I get so withdrawn when I have a bad day, and also why I get so tired.

Sorry about writing an essay, but maybe my experience may help others who have some of the symptoms I had to make the necessary connection to RA/PA and allow them to get an earlier diagnosis than I did.

Now have pain in all my joints as well as restricted movement in my neck, maybe an earlier diagnosis could have prevented some of this !!!

However, as I tell myself there is always someone in a worse condition than me.

tillytop

Hello Kerig and welcome to to the forum!

I'm sorry about your PsA diagnosis - but pleased that you finally have a diagnosis after struggling for so long. I have had RA for 17 years or so and I was "lucky" in that my symptoms were pretty much textbook RA so diagnosis was simple but I know from others that diagnosis can be a very complex process.

I was very encouraged to hear that your hospital runs a course for those newly diagnosed and I am glad that your husband was able to go too because our "other halves" are living with this disease too and anything which helps both parties to understand better has got to be a good thing.

I'm sorry you have to wait until January to get started on methotrexate and/or Sulfasalazine and I really do hope they help you. I have had both in the past and I know there are many forum members taking one or both of these meds so if you have any questions please don't hesitate to ask.

Just one thought - you say you are taking Naproxyn as required which may be what you have been advised to do by the doc. But in my experience, because non-steroidal anti-inflammatories like Naproxen work differently from pain meds, they tend to be more effective if taken regularly. So if you find taking them "as and when" is not helping as much as it might, I would advise you to ask your GP for advice. If you do start to take them regularly though, please do ask your GP for a stomach protecting drug (eg Lanzoprazole or Omeprazole) to take alongside because NSAIDS can be harsh on the stomach.

Welcome, again. We are a friendly bunch and you will be made very welcome.

Tilly xxx

valval

you say you had to come off the meds rhummy gave you have you been in touch with them to let them know they can start you on other meds or give you steroid injection to help you through you should ring and let them know you are not on them now val

knuckleduster

Hello Kerig

Can't help with the pain or meds, as I've got OA. But just wanted to welcome you to the forum and let you know we are all here for you.
Anytime you want to rant and rave, or give us good news, do please let us know.

Hoping you get some answers and help soon.

Janet xx

frogmella

Hi Kerig,

I can't help with meds either cos I also have OA in my spine. But I can sympathise with your pain and tiredness. Also with the journey you have been on to finally get a diagnosis.

This is a brill forum, everyone is helpful and no one judges. They just dish out support and top tips!

Helen

stickywicket

Hi Kerig and welcome from me too. I'm afraid it's quite a common tale on here - the long wait for diagnosis. Like Tilly, I was apparently a classic case but many have a long frustrating wait if symptoms aren't particularly obvious and/or medics aren't on the ball.

I'm sorry the pred was a nono for you as it can help a lot short term. Like Valval and Tillytop, I'm wondering who just told you to take naproxen as and when needed until you see the rheumatologist again. Anti-inflammatories are more effective taken regularly but, as one of the others said, they are best taken with a stomach-protecting med.

I hope the appointment is early January and you can get established on some helpful DMARDS.

barbara12

Hi Kerig and a warm welcome from me
I am glad you have joined us, at the very least you can unburden yourself to people that understand some of what you are going through.
And what a good idea the course is, some partner do find it hard to deal with.
You take care (((((()))) xx

Kerig

WOW !!

What a great response from members, and so friendly - thank you so much for your comments.

It was my GP who said to take them as necessary, he didnot want me to take them if I could avoid doing so.

Injections were mentioned by Rheumy however I suffer from a real fear of needles, in fact I pass out if I see someone else being injected, they decided injections are not the way forward for me.

Interestingly, on the course I went on there were about 30 people and my husband was the only "partner" in attendance. Since attending the course I have found his attitude has changed in that he now understands that the fatigue is part of the PA, and has been much more understanding and helpful already.

One thing I have found is that I get sensations in the palms of my hands, and they itch - almost like mini chilblains type sensation, It is not exactly painful, more irritating. Does anyone else experience this sensation :?:

Yesterday was a particularly bad day for the fatigue, I could hardly do anything all day. today is better, although i am still feeling a bit tired and my fingers will not straighten out today - however tomorrow is another day and things will probably be a lot better than the last 2 days.

It is nice to know the forum is here, it is nice to be able to say how you feel without other feeling as if you are moaning.

dreamdaisy

Hi Kerig, it's nice to meet you and I'm glad you have found us. I too have PsA but because mine did not start in the classic way it went unrecognised as a form of arthritis for five years, then was termed an inflammatory arthritis and I began the meds. It was only when my palms and soles helpfully obliged with a bout of psoriasis that the medical penny dropped (nine years after the onset of the trouble and five years after I began the meds). Mine began in my left knee and, co-incidentally, I also had what I now recognise to be psoriasis on my scalp but that was dismissed as a form of dermatitis.

Drugs such as Naproxen do work better if taken regularly but that should be cleared with either your GP (who is not a rheumatologist and will therefore not be fully aware of the ins-and-outs of our treatment) or your rheumatologist (who is). I benefit from a daily dose of diclofenac and soon notice if I forget to take it. Do you also have a stomach protector? These are vital if one is regularly taking an anti-inflammatory.

I began with sulph in 2002 and over the years various drugs have been added and removed. The sulph has not done a great deal for the arthritis but it does help to control my skin which is rarely troubled by psoriasis. I too work at home but I've had the past two weeks off due to carpal tunnel surgery and a third week is going to be required as I am healling quite slowly thanks to the immuno-suppressant meds. Anyhoo, who needs money?

Stick with us, we are a knowledgeable and supportive bunch of creaking people and I look foreward to getting to know you better over the coming weeks. I wish you well. DD

PS About the tired thing: I've been tired since October 1997, on my better days I'm a little less dozy but on days like today, well, I honestly don't see the point in waking up! The snoozles are beckoning again and I'm off to indulge. I tis part and parcel of the disease, and I often wonder if it's connected to the meds as well.