Recently diagnosed and struggling

Skin, nail and hair health
1

I've recently turned 40 and have suffered with psoriasis for 35 years. Last year I ran the London Marathon and suffered some knee pain during training and after the event. I underwent a lot of physio with little success before finally, in July last year I was diagnosed with psoriatic arthritis.

Since then I have had significant pain, on and off, in my feet, ankles, knees, elbows and shoulders all at differenrt times. In the last month it became unbearable however, with such pain in my right knee that I could not walk for a week and had to take time off work. With some NSAIDs this finally got a lot better after 2-3 weeks, only for my left ankle and foot to become excruciating last weekend - I'm gusessing through that leg taking all the weight when my right knee had been bad.

Since seeing a rheumy through Bupa in July last year, who diagnosed me, Bupa have refused to pay for anything further as say it is linked to psoriasis. I am now seeing the same consultant thrpugh the NHS but have long waits to see him. Over a year since diagnosis and I am yet to start any treatment and I am finding this frustrating. My dermatologist keeps trying to get me on drug trial such as apremilast and secukinumab, but it keeps falling through at the last minute and I end up on nothing at all.

I tried cyclosporin for the psoriasis over 2 years ago but had horrific side effects - my blood pressure went dangerously high, causing terrifying panic attacks. Since then, and certainly since the diagnosis, I have suffered with anxiety and depression which saw me signed off work for a number of months last year. The dermatologisty has suggested that in his experience, methotrexate can cause major mood swings and problems for those who have suffered with mental health problems, so feels it is not suitable - along with very slightly rasied liver function shown in a blood test.

However, the rheumy is really pushing methotrexate and I'm a bit scared by it - I've worked hard to get through the depression and anxiety and really don't want to return to it. He has suggested sulfasalizine and leflunamide and asked me to see the dermatoligist again to find out which one would be best for the skin problem too (the psoriasis is quite bad).

So right now, other than using protopic (tacrolimus) ointment on the skin, I have no treatment. In was given naproxen for the joint pain, which does nothing at all. So they gave me cocodamol for the worst days, but that also doesn't help, and tends to put me in a bad mood.

The pain from the joints has been so severe over the past few weeks it has really upset me that this may just be life now. I have a 4 year old little boy and an 11 month old baby boy, with the image in my head of running around with them, playing football and being silly rapidly disappearing. This is starting to ruin my life and looks like making me a rubbish dad as well. I'm struggling with all this and can see know way out, as well as finding it frustrating to get two different NHS departments to speak to each other.

I've never posted on a forum before and have never spoken to anyone with psoriatic arthritis so I'm looking forward to hearing from some like minded people. I could do with some advice and support.

Thanks in advance

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Any advice on exercise would be welcome too. I was a runner, as I have said, buit have had to stop that due to the impact. As such I have put on over 3 stone since the marathon last year. I quite like swimming and enjoy the gym, but find it hard to even think about it due to the pain. Should I push myself to help in the long run? I'm not a naturally fit person, I have always had to work hard at it. I have done next to no exercise for the last year.

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Hi Bobby,

I think the Rheumatologist is the one you have to listen to in this situation!  I had severe psoriasis over most of my body, even down one side of my face, (people would stare at me in public!) and I couldn't care less what people thought!  My dermatologist said there was nothing more she could do for me unless I wanted to go on heavy duty drugs that had side effects <scared me>.  I said no.

Then very suddenly I too got feet and heel pains as well as knee, hand and hip pains that moved around, always worse in the morning and at night and an overwhelming exhaustion.  I was diagnosed with Psoriatic Arthritis and it took a bit of messing about but finally I am now on a regime that has left my skin COMPLETELY clear!!! (I never thought THAT would happen!!!) and my pain in remission although I still get tired.  

Please don't be scared of the side effects, you couldn't get anyone who reads up more on that kind of thing than me!  I have had a lot of health issues so I didn't want to make things worse, but my life had become intolerable so I just bit the bullet and tried things.  First I tried Methotrexate tablets, it didn't seem to work for the first 3 months, so then I tried injecting it, then we found out I was on too much (15mg) which affected my liver and I felt nauseous so reduced it to 10mg and all was fine.  My skin  cleared and no pain!!!  

But then I stopped it for one week due to an infection and when I resumed it, it didn't work!!  Pain increased and so I was put on Sulphasalazine, I felt like a dopey zombie so only had one dose (I could barely hold a conversation, bad experience) and then I was trialed on Enbrel (Entenercept).  It slowly improved things for me but not completely, so I was put on a low does of Methotrexate as well.  I argued about this, why would it work now when it didn't before?  But it has!  I now only have pain when I push myself.  I was told that Lefledamide gave you diarrhoea and that Enbrel and Humira were the first line of defence in biologics, but I don't know!

So I just want to give you hope, I felt my life was over.  I felt like I was going to be disabled at 39 and just flopping around the house, crying in pain.  BUT, be brave and take the rheumatolgists advice and try a biologic, it may transform your life!  

Take care, Rachel

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Hi bobby as the old saying goes your not alone I to didn't know what was happening to me pains in same joints that could move daily swollen fingers half egg shaped lumps on top of wrists the thing is if you don't try you don't know we are all different and all react differently combinations of drugs work better than single ones and I agree the rhumatolagist knows best after all they have trained for this,finally there are lots of us out here and lots of sites on the net check as many out as you can then you will have an informed opinion bobby it does take time but once your in the nhs net you will be looked out for you take care steve.b

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have a read up on this canibiidol

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I have suffered this plague now since 1983, I was medically retired in 1988 and until recently had my first so called remission last year.

My skin is not as bad as it used to be although the associated arthritis has done my life in since the early days of this dabilitation illness.

Most of the problem I understand is genetic, with stress and depression following a close second and third. The whole rotten desease seems to have been caused by my two Grandfathers, they looked into my history and they even thought for a time it could have been caused by one of my Granfathers been gassed in the World War 1.

All I know it has effected my life in a bad way, I have been unable to tolerate DMARDs medications, they knock my immune system right out to botton and effected many of my joints and skin areas. We all know how it can effect us and to be honest at 66 years old I have had enough. Because of the double barreled possible infection route it was suggested the possible route of infection would effect any children we may have had, also the medications supplied could have effected any children I could have sired.

I was a very strong swimmer and when the skin flared, and when using the ointments my skin was effected by the chemicals in the pool, so that was the end of that. I used to love climbing in Scotland with the arthritis, that had to cese because on my bad hips, spine and feet, even my hands were effected, and I have just had a trigger finger operated on.

If I was honest it has been a real problem. My last Specialist was informed I was unable to take DMARD because of contrainductions could not take any of these drugs, tablets and injections. So He said I could not try any TNF and could do nothing to help, so I am a pensioner who was told this problem would clear at 55 for my retirement. Tough, keep taking Opiates, NSID and Amytryptalene for nerve damage and get on with it.

Now I have had tests because of my short term memory, they say although not sure it has been caused by strong medications. 

One good thing about it the tests say it is not linked to any dementia. Great.

I have tried all treatments oils, creams ointments etc. I have not been allowed TNF, because of not taking DMARDs

BOB

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Thanks for all that. I'm very open to a biologic, but the route to being approved for one seems to involve at least six months of methotraxate first. I know this is odd, but methotrexate is the only drug I'm scared of really, as my depression and anxiety last year was pretty severe. I really dont want to go back there! Also, one of my great pleasures in life is enjoying wine with my wife and that would have to be knocked on the head too I guess. Happy to make the sacrifice if it worked though.

I can't see the dermatologist until mid October now so will have to wait, still with no treatment. My head is all over the place at the moment and my son is starting to get used to me not being able to roll around on the floor, or race him in the park. He even kisses my knee all the time to make it better bless him. I don't want him to have to get used to me being like this.

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Hey Bobby diagnosed a year ago with psa. I'm 60, a young 60 so I thought but this hit. I'm suffering right now I guess cause of the rain. You are not alone this has hit me hard to, it makes me mad cause 1 day your great and the next day ugh. Also depression is very common with psa people. I'm fixin to start going to a counselor. You have to talk it out, I mean only if you feel comfortable. I wish you well. I am on Humira. Hope it gets better

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Hey Bobby i can relate to your struggle.

I don't have arthritis, but i do have a form of psoriasis called guttate psoriasis.

I've been on methotrexate for 3 months now and to be honest, i hate it.

It makes me feel sick and lethargic all the time. And then on top of the physical side effects and the depression that was already there because of my disease, i feel like I'm only getting more and more depressed from it. I have a difficult time dragging myself out of bed and ive lost my quality of life.

Part of me just feels like there is no answer and no way out. I have seen a little improvement in my skin since starting the MTX but not enough for me to be comfortable recommending this drug to anyone else.

My only advice- completely exhaust all other options before trying this. Its gnarly

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To add to this, since starting MTX i put on a couple pounds so i got back into the gym and hired a personal trainer on top of it.

I find myself nauseous and struggling in the gym more than i had before.

Can't really say whether it's the meds or just that I'm out of shape.

But i DO know that it has been more difficult for me to drop these few pounds since getting on the MTX. I've never had any issue losing a little bit of weight in the past when i eat healthy and use the gym.

Good luck Bobby i hope you and your dermatologist find something that works for you! Keep us informed! You're not alone in this struggle

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Hi BobbyD14

I'm so sorry this is happening to you.  I'm a veteran - PA since 12 years old, both hips and knees replaced and right wrist fused in my 20s.  I'm now in my 40s and doing okay.  MTX is a scary drug but it works - it slows down the destruction of the joint and the spread to other joints.  All drugs have side effects and do different things for different people.  Celebrex changed my life overnight but others haven't had much sucess with it.  You just have to find what's right for you.  

Depression from the pain, financial concerns, exhaustion and fear of the future is what all of us face.  Antidepressants not only help with the depression but can also help with pain management.  I've been taking amitriptyline and it helps considerably.  You really need to get to a rheumatologist.  

You can still be a great Dad!  I often said that getting this disease at 12 was easier because it didn't take a career or passion away from me.  My point is kids adapt - they might not realise it now but they will understand your limitations and not judge you for it.  They just see their Daddy - not a Daddy who can't run and jump.  Adaption is much harder for you than it is for them.

Without suppressing your immune system the inflamation is running high.  When you have "hot" joints exercise should be minimal.  You can just do more damage to your joints.  The "use it or lose it" mantra should have several large disclaimers with it.  

I hope this helps a bit.  If you want to ask me anything specifically I'm happy to help.