I am a new poster to these forums so bear with me. I have introduced myself on the RA board if you are interested. I see alot of you have PA, i am interested to find out if there is a common type of psoriasis associated with PA. I would like to hear about the different types of psoriasis and how they are dealt with as well.
I have a very mild case between my eyebrows that only shows when my meds aren't working. It is a small patch of dry flaking skin that is not obvious if i rub the flakes off and moisturize. I also have what i think is pustular psoriasis on my chest, stomach, upper arms and back. The doctor thinks it is a reaction from MX, but i had the rash before i started MX. They never listen! The rhuemy gave me a steroidal cream that did nothing but made it worse because you are supposed to stay out of direct sunlight. Being summer here in Australia, avoiding sun is rather hard!
Was wondering if anyone else suffers anything like it. If so any advice?
Hi,
Sorry, can't help with your query on pustular psoriasis, I have a small patch on my scalp (at the top of my neck) that disappeared with my meds. I also get a different type of psoriasis in my groin area which looks red and shiny rather than flaky. My PA affects all of my joints except my right knee but worst seems to be my spine (I get sacro-ilitis) and my chest (costochondritis). I take MTX (and folic acid) and infliximab (remicade) plus arcoxia and either tramadol or co-dydramol. My hands and feet swell but not the typical PA type, the swelling is between the knuckles across my hands and feet and on the top of my ankles and wrists. Interestingly I had the psoriasis from about 13 years old and only really started to get major joint problems about 3 years ago (I am 30). My maternal Aunt has psoriasis all over and my sister has it on her elbows, knees etc but no-one else in my family has PA or psoriasis on the scalp. I used to use a steroid lotion for the psoriasis but as i has disappeared (as one of the only positive side effects of MTX!) I no longer use any lotions.
I think most people post on the RA board and only come here occasionally so you may wait a little longer for replies here - welcome!
KT
Hi KT,Hi Jennee,
Well the psoriasis alone wasn't really much of an issue, it was only on my scalp and the steroid lotion kept it in a small patch about 2inches in diameter, I just had to brush my shoulders lots to hide the evidence
I have a few coping strategies - let me know if there's something you're struggling with! In general I try not to treat life as a race any more - this has been hard for me, I am used to being on the go 24/7, doing 2 jobs plus studying for a degree then coming home to do a spot of DIY before nipping to my Grandma's to do her cleaning! And that's before I get on to nights out dancing! Now I have learned to pace myself (most of the time), wear sensible shoes, rest lots and not to be afraid to say no to things. So when I get asked to do a shift at the weekend and I've had a tough week I pretend I've got plans and politely decline (even when my plans are to sleep and read my book / watch DVD's). You need to rest and recuperate lots! I bought my sofa for comfort first and style second, bought the most expensive mattress for my bed with a cheaper frame, buy new pillows often as they do lose their oomph, and plan rest periods into my week - for example Monday for me will be busy - I've got loads on so I have booked a study day for Tuesday so I get a lie in and lots of breaks. Luckily my employers are very understanding nad we have flexi-time so I can have late starts if I need them...
Gosh I'm rambling on now so will sign off - KT
Thanks for the tips KT. In the last 10 months my pain levels have done nothing but increase. I started a new job at Easter in 2006 feeling 95% and by October got to a stage where i had to call in sick. I have never done that in my entire working career. It was a real blow. I ended up having to have a month off, i felt really guilty. I worked 7 days straight after warning them i might not make it through. When i went back i told them no more, now i only do 6 days a fortnight and no more than 2 days in a row. Was thinking of giving that up too. Which is a huge decision in itself. Only 2 weeks ago MTX seems to have taken the drag out of my walk but not the pain. I have the same type of swelling you do. Am increasing to 25mg next week. As each week goes by another joint i didn't know i had will start to hurt. When does it stop?! I can't even do the shopping without the kids to push the trolley and do the thinking part of it for me. I am so bored of resting, i hate it so much.Jennee,
I know where you are right now nad I know it's rubbish. BUT it can get better - I can't guarantee that it will be perfect but I am certain you will be able to find some treatment that will control things enough for you to work (all be it more limited hours or whatever) and do the things you need to do. One of the things I've found hardest is to cope with the "but you look fine" reaction. I caused a massive fuss at my local supermarket because I can't carry a basket or push a large shopping trolley but I can just about manage with one of their smaller, shallower trolleys which they don't have amny of. I went n one day and couldn't find a trolley, after limping from my car to the shop there was no way I was going on a trawl of the car park so I asked the Greeter for a small trolley, she basically said I'd have to find it myself before practically running off to assist a couple at the doorway, one of who was in a wheelchair. I asked for the Manager and made my feelings clear, I didn't mention anything about my arthritis because it's none of his business but I just said that customers should be given the help they ask for, regardless of what judgements the staff make about who is more or less deserving of their attention. This attitude ticks me off - I know I look OK, most of thetime I don't limp so noone knows when every step is agony. They think I'm beng awkward when I get the lift to go up 2 floors but I know I will be in incredible pain if I exert myself and begin to breathe heavily. Work are good - they try to be flexible and I have had an assessment with an ergonomist to get a workstation set up that helps alot BUT they can't cope with my requests to use taxis for client visits- because I go to work by train (I live 100m from the station and work is less than that from the other end) they can't understand why I find public transport hard to use. It's hard to explain that if I'm going somewhere I won't know if I have to walk at the other end or if I'll get a seat (I choose the train I get carefully to avoid the busy ones). Even a short walk is a killer if it's up or down a hill. They also can't see that the walk I do to and from work is enough for the day - any more is too much and I'd end up having even more time off! Oh well - another battle to work on...
I am not sure what some of the things on your list of meds are - I know they have different names for things in the UK - are you taking any Biologics? Maybe you should ask about this, sometimes MTX on it's own isn't enough.
Keep fighting Jennee, don't feel guilty for taking time off work - you need to get treatment sorted out first then you can work out a way to go back.
KT
Hi, Jennee. I have Guttate Psoriasis. Was diagnosed with it about a year ago. I had had a few small patches pop up occassionally before that but never anything that bad. Then suddenly I was covered in it, especially all over the back and chest. I used to go to the dermatologist and get 2 big antibiotic injections (one in each cheek, ouch!) but since being diagnosed with PA, the meds for that seem to be keeping the psoriasis away.Hi Jennee I have psoriasis on 2/3 rds of my body the meds are no longer keeping it at bay. I am now trying one of the old fashion treatments and that is going to a tanning booth and seeing if it will help. I am 49 and have had pa for well over 5yrs now and many of those year the drs couldn't figure out my pains until I was sent to an rd. I have pa in my toes, feet, hands, neck, and spine. My hands do swell especially the palms and I do wear thumb splints at night and during the day at times if the pain is bad. I am doing much better, 2 yrs ago I couldn't even turn the key in the ignition of my car!!!! The pa seems to be in check but the psoriaisis has gone crazy!!!!Planning, its all seem to do lately, every move has been planned it seems. Always at work i plan the path i take to i don't have to walk more than i have to. I'm on my feet for 6 hours and by the end of it i am on pain killers and dragging myself around. I work in aged care on the hospitality side of things, so all the nurses and carers are trained to look for someone in pain. They ask me everyday, "have you got a sore back?" It makes me wonder, time and time again i have told them i have PA but they don't seem to get it. I give up trying to get through to them that it's not just my back. I get home and sleep. The fibro makes sure i am always tired. And the Dr told me to increase my Prexige (anti-inflammatory ) which makes me real dizzy and foggier.Have increased MTX as well which is probably making me dizzier again! I should change my name to dizzy lizzy! When i look at the floor i can see the floor but the pattern on it looks higher than the floor. Weird. Concentration is difficult right now. Sometimes i even truly forget how to sign my name, that scares me. KT, no i am not on biologics as yet. The side effects look worse than MTX though so am dubious of them. I know what you mean about not doing stairs, i wouldn't dream of doing more than four stairs. If i did that would set me back at least a week to get over it. I know i am putting on weight because of all the lack of movement. I gave up smoking 11 months ago and put on weight because of that, and now the lack of movement keeps it on. Can't win. Maybe i could try asking my work if i can resign temporarily until i find the right combo of medications. I just don't want to give in to the pain monster!! But it is so over whelming. Mine looks like alligator skin, it is very thick and scaley, the tanning booth seems to be helping but the dr told me it can take a while. I am at a pont i am willing to try anything. My pa is pretty under control right now, I am on my feet all day , I run grocery receiving area, so I am on my feet for 8 hrs or more. Hardest part for me is sitting down for awhile then getting up and walking. If I stay on my feet no problem but if I sit watch out!!! hehehehe I have plaque psoriasis and inverse psoriasis. Psoriasis, does not have to be hereditary that is in only 1/3 rd of the sufferers. It is an immune disorder of your body, so even though no one in your family has it you can get it because your immune system has weaken. I can tell you that things will get better because it did for me, it just takes time for the meds to take affect, but unfortunately that just makes it worse because we want to feel better NOW!! Hang in there and know I am here to lean on anytime, I've got big shoulders and they don't hurt either. hehe. Take it easy and be good to yourself. memeThanks for the encouragement. I get so low sometimes. Like yesterday i was struggling to find a reason to live. Having someone who has got on top of it is like a light at the end of the tunnel. Thankyou so much for your caring time.
Hi Jennee,
I hope you are coping OK. I know that the feeling of frustration can get on top of you at times but it will get easier to cope - I promise! Eventually you will find a way through and there will be bad times but also good times that can help take away the memory of the bad ones...
I know also that thinking about biologics can be scarey so I'll share my story in the hopes that it makes them seem less of a monster.
I started on MTX, built the dose up but found that after 12.5mg I couldn't tolerate the side effects and, alhough my psoriasis was getting better, the joint pain was only marginally better. So I saw the Consultant and we talked about biologics. I was put off by the side effects (as I had been by MTX) but did some research adn found that they are rare. So I had to make a decision... In the end it was no contest, I absolutely refuse to let this [insert your own expletive here] disease take away any more of my lie than it has already. I insist on retaining some quality of life and am prepared to fight for it! All my life I have thought I was quite a pacifist person but when it came down to it I was ready to bring out the heavy artillery. My saving thought was that I can monitor any side effects and stop the treatment, I was in control. So I now take MTX 7.5mg a week which gives me very few side effects plus I have infliximab (remicade) infusions every 8 weeks. I have no major side effects with the infliximab, for the first four infusions I felt tired for the rest of the day. I had treatment number 7 on Friday and came home and cleaned the house and moved suitcases etc from under my bed ready for the carpet fitter coming on Saturday! It seems to work for about 6 weeks then the pain and tiredness comes creeping back in. Unfortunately the powers that be decided they will only fund treatment every 8 weeks so we're looking for a way round that. You have to be carefully monitored and have blood checked like with MTX but now I only have it done every 8 weeks at infusion time.
For me taking the infliximab has meant that I can work (only 4 days off sick in last 12 months, 3 of those from before I started it), I can also get out more, have just started seeing a new man (which I thought would never happen!). Yes I have bad days - especially if I overdo things. Those 2 weeks waiting for my infusion can be terrible and I know not to plan anything major for them. I am lucky I suppose to have an employer who allows me time off to attend for treatment or appointments without quibbling (also without adding sick days to my record) but conversely I think they're lucky to have me on their payroll (LOL).
I suppose I'm just trying to say it seems to me that you need a little more treatment or help than you're getting. Taking the next step in terms of treatment is scary and a big decision but don't rule it out, talk to your Rheumatologist about options and they may have some suggestions for you to think about.
All the best for a better week this week!
KT
Thanks KT,Hi Jennee,
I had a nightmare experience with a Physiotherapist who tried to convince me I didn't have arthritis but instead a discogenic back pain. After a humiliating experience of the exercises he made the Junior Physio do with me which made me much worse I went home crying with pain and spent a week in bed! So I haven't bothered with Physio since then...
I share your frustration about getting appointments - I am waiting to see the Rheumatologist now - I only get to see them every 6 months and would need to be practically dead to get an emergency appointment! However we do have a specialist Nurse who deals with Biologics and because I am on Infliximab I can call her if I have queries. She has arranged for me to have cortisone injections in my toes and a depo-medrone injection when my costochondritis was flaring. I also have access to a MTX nurse if I have worries.
I hope you're feeling a bit better?
KT
Hi Kt,Hi Jennee,
Our specialist Nurses work with the Rheumatology Department in the hospital, if you take MTX or any of the biologics you get to see them. Unfortunately because of our Gov't funded Health Service our time with the Rheumatologist is strictly rationed, I rely so much on the nurse specialist! Also the system in the Uk works funnily. You get referred and see the Consultant Rheumatologist until you get a diagnosis, then you will probably see a House Officer (hospital Dr working under the Consultant), House Officers move on regularly in their attempts to become consulants so you rarely see the same person twice.
On your sore throat - did you let the Dr know you were on MTX? I have usually been told to have a week break from MTX if I have an infection and to take antibiotics which has cleared up throat, chest and sinus infections within a week of getting them. If your antibiotics haven't worked maybe go back and discuss it with your Dr, because MTX supresses your immune system infections can take hold and get much worse, if your own defences can't cope you might need extra help!
I hope you can get it sorted out soon.
KT
Hi Kt,I have no idea what normal is - I'm not sure I did even before PA!
Our Healthcare is free - we pay for prescriptions but not for Dr's or treatment. I could pay for private healthcare and many people have insurance to use provate healthcare but I stick with the NHS, the original motto was "free at the point of need", I suppose we pay via our taxes! The downside is no choice and little control over who you see and when.
I thought I was coping but had a big row with my new boyfriend at the weekend, we made up and he was lovely and very understanding but I felt awful about it. I went to see my GP (local Dr) today for repeat prescriptions nad she asked how everything was - I broke down and had a bit of a moan about hating what's happening to me, being frustrated about not doing everything I want to or think i should do etc. I told her about the row I had with boyf. SHe was so understanding and we had a chat about not being so hard on myself etc. It kind of helped to put stuff into perspective! SHe offered to sign me off work sick if I need a little break but it's tough as I'm doing an intensive training course for my job that finishes in October and I don't want to get behind. So she suggested seeing a counsellor to talk about it all - I'm going to look into it. And I might take her up on a week off next week just to re-charge my batteries!
Hope your sore throat is OK.
KT
Hey KT,