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Welcome Greetings and Introductions
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Hey all. I came across this site a day or two back and thought it might be useful to be able to have contact with other people with the same condition(s). My story is as follows:

I woke up in May 2014 with what was assumed to be an injured ankle, but other joints became involved over time and psoriatic arthritis was diagnosed in January 2015 - although, oddly, my psoriasis has pretty much disappeared since I've had the arthritis!

I was put on Sulfasalazine a month later, with methotrexate being disregarded as my liver isn't quite as it should be. Nobody knows for sure what's wrong with it, an ultrasound was all clear, and so the assumption is that it is to do with medication I am taking for something else (more on that in a minute). A few weeks after taking the tablets, the lymph nodes in my neck swelled up and I was told to stop the tablets, wait for things to return to normal, and then start again. I did this, but things were worse this time with a rather gross skin infection accompanying the nodes the second time around. Tablets were stopped, although it seemed to take a couple of months for me to get my health back.

I was then told to start Leflunomide. However, I also have bipolar, and was struggling heavily at the time. I couldn't cope with the anxiety of the endless blood tests that these meds required, and while my arthritis might have got better, I would have ended up with a full-blown breakdown. I basically walked away, and didn't take anything. While my arthritis spread and got worse, I was able to cope with life easier and got myself back on a semi-even keel. I just needed time away from doctors, nurses, needles, and other tests.

In the summer, I contacted rheumatology and told them my situation and that I needed someone to listen to the idea of taking my whole being into account rather than my joints. I was lucky. I was encouraged to write down everything that was going on and what I couldn't cope with, and that they would get their heads together for a solution. That solution was hydroxychloroquine, which I have now been on for six months with some good results. Things aren't great, but it's a good halfway house, no side effects that I know of, and few tests.

Anxiety levels went through the roof just as I started them, though. I had blood tests just before and my ESR was 107. It had gone up from 40 or so just a few months earlier - hardly surprising probably considering how much pain I was in at the time, though. However, my previous GP, in good faith a year earlier had told me (when I was concerned about it being about 35) "don't worry, that's normal, all things considered. It's only when it hits 100 we worry that it's cancer!" She was trying to put me at ease without any knowledge it would go up to 107. Nobody seemed to think it was too much out of the ordinary, though (and I questioned them enough times!), considering the arthritis was in 6 or 7 joints by that point and not being medicated.

Still, I now have to have a blood test in a week or two just to monitor things and my mind worries that things have been put down to the arthritis when they could be something else more sinister! This is all not helped by recurring night sweats. They're not bad, in that they don't soak the bed (just my chest and neck are wet), but they seem to occur so often now. I know that many get this because of rheumatoid or psoriatic arthritis - but I worry/panic, with health anxiety being part and parcel of my bipolar when it flares up.

Having both conditions together is, quite frankly, a nightmare because one aggravates the other. But I guess it's something I have to get used to. But is there anyone else here who has PSa combined with bipolar or depression that they had beforehand? I would be interested to know how you cope with the worry of tests and the non-pain/stiffness symptoms such as sweats, tiredness, etc.

Thanks for reading my essay! ;)

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I should perhaps add that my worry about the inflammation was lessened a little by a friend of my mum who has RA and had a level of 126 a few weeks ago. At least I now know my own level was completely off the scale and scary!

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We are dealing with both bipolar and psoriatic arthritis in my house, but 2 different people. It's challenging enough to manage each independently, but I can see how together can be a major issue. For the blood monitoring, once things settle down will you be able to go back to less frequent monitoring?

Also, would you be a candidate for a biologic? This might be something to discuss with your rheumatologist, as the risk profile might be better. We've got some great materials here, including the info for new members. There's also a great book recommendation.

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The blood monitoring for the tablets I'm on at the moment is only once every few months, which is why they put me on it. Quite how I'll cope when I have to "upgrade" I don't know. We'll see what happens. Biologics would certainly be my own choice when these tablets stop working, as I guess they will at some point. I'm wading through the materials here as we speak, and so am sure I'll find some things that will be useful. Panic/anxiety had set in really badly a couple of nights ago when I joined. I think it's going to be just nice to speak to other people with the same issues and for whom the things I worry about might be the "norm" and so can get help put my mind at rest. Thank you for replying so quickly.

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You're more than welcome.

I've never been on monitoring more frequently than every 2 or 3 months. That said, I've never had any complications or high sed rate. In terms of the mental health piece, I don't know how many people are dealing with bipolar, but depression is fairly common and there are plenty of people here being treated for it.

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Welcome, daronfan! I totally get the anxiety with all the appointments and blood tests the xrays then mre then another specialist after another specialist! Does it ever end? I almost always get my blood pressure checked 2x, because no matter if the appointment is morning or afternoon it raises the second I go back in the room. Usually I relax enough by the time I am done being seen for my bp to drop to normal levels, lol! I assume bipolar includes much more. My point is you are not alone feeling overwhelmed, I have spoken extensively with my primary about this too. The meds for our disease sadly require a commitment on our part and unfortunately also require monitoring regularly with most. I do love Stoney’s recommendation about a bio, they usually require less monitoring and can have lower side effects in general. This site is amazing in support, and am sure you are far from the only one with bipolar. Hopefully someone with equal struggles will respond but we all can help support you with the experience and hopefully lessen your fears that come with treatment. Glad to meet you!

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Thanks Rachael. It's odd, because you wander around the internet and it tells you how horrible the biologics are, and then come here and people say there are less side effects! I'm hoping these current tablets will keep things at bay for a year or two, just so I can get used to the illness and work out how to deal with it without the stresses of side effects and tests etc.

I do have one other question, though, do you know if there is a site or a place where you can get advice on how to get about? I know that sounds a strange question, but I can walk a small distance, but not much, and haven't yet plucked up the courage to leave my own city since all this kicked off a couple of years back. I would so like to go on a city break, or a day trip to London or something, but think I would have to hire a scooter or a wheelchair or something to get about as much as I would need to. And how do you negotiate buses and underground in those things? These are the sorts of things I really need advice with, and I wonder if anyone knew if there was an advice line or something concerning these things?

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Hi darinfan ... I want to comment on the getting around because I was in the same situation a while back and, in fact, couldn't even make it to Norwich. The right treatment has improved my walking ability no end but I recognise that to really be able to have the freedom to do all I want to do a scooter is likely in my future too. The "expert" here on the site as far as mobility aids are concerned is Seenie. She travels the world with her scooter and there are lots of posts here about that so look her up. I expect I'll chat with her later and will ask if she's seen your post yet.

I'm not aware of any specific helplines but what I've learnt from my own experience is this: airports are great all you need to do is book mobility assistance ahead, likewise trains, buses are pretty good especially in London, forget the Tube as few stations have street level access and even if you are just using a stick or crutches involve way too much walking and stairs - use the bus instead. Most things are do-able but just take more advance planning and usually a bit more time as well.

Although you're trying to minimise your appointments I think you might benefit from seeing an occupational health advisor (as your GP for a referral), they are a great help on getting you the right assistance aids. For example, a support for my knees plus proper use of a stick increases my walking comfort, distance and duration enormously. The charity shops often have second hand wheelchairs so you could perhaps ring round and there are often secondhand scooters advertised in the EDP or take a look on Ebay ... certainly worth minimising outlay at this stage.

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Great advice Jules! Yes, Seenie is the one who can really lend experience on the question. In fact I think she just travelled to UK within the last year or so. I live in the US so not much help here. Glad you found us and remember keep the questions coming!
As far as bios having less SE vs. Other Internet info is something we have experience in. I would guess half of us here use bios most do not have problems but improvement using them. I think drug companies and doctors give all the possibilities to prevent lawsuits and completely inform us. This makes them seem scarier than they usually are. I have had more trouble with DMARDS than BIOS. I can only vouch for myself though, not right for me to talk for everyone. Grandmaj can also offer advice of the fear of starting this med. Take care!

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Welcome darinfan!

I think a lot of us will be able to relate to your fears to some extent, even without the added challenge of having bipolar. I've come to see Psoriatic Arthritis as the devil I know, it no longer frightens me or 'gets to me' on a deep level. I hope that you will start to feel the same way over time, familiarity can have that effect. However I have recently found myself freaking out about any lumps or bumps. Basically I just convince myself that I have cancer while knowing that my fears are quite irrational. I put it down to the fact that PsA has destroyed my old sense of being invincible & I can't control the fears as such, I can only wrestle with them.

I really like that you asked your rheumatology department to consider your situation in its entirety and it's great that your request met with a good response.

As regards mobility, Seenie is definitely the expert! I realise that you are interested in travelling a bit further afield, but I found this centre which I should think is near you:

http://norwichaccessgroup.org.uk/page9.shtml

There is something very similar in my local town and I've rented a mobility scooter from them in the past (not because of PsA as it happens). So I should think there are similar schemes across the country. 'Shopmobility' seems to be the key word for this kind of short-term hire.

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LOL, I heard my name! Yes, I am probably the mobility expert here. Nice to meet you, Darinfan. Before I start into my various "mobility" party pieces, I have a few other things to say. I'll make them brief (I can hear my fellow moderators laughing...) Here goes then:

1. The biologics have a remarkably good safety and side-effect profile, unless you are an adolescent male taking them for crohn's disease, in which case you have an elevated risk of certain cancers. For most of us, the worst side effect of the biologics are related to the very high cost.

2. I suffer from depression that (listen carefully now) got worse as my PsA got worse. And yes, there is a connection, as both my rheumatologist and my psychiatrist have pointed out. The combination of a biologic and a new anti-depressant have me in better mental shape than I've been in years.

3. Fear this disease, not the drugs. The physical damage that PsA can do is really pretty horrific. 'Nuff said.

Now mobility. Please don't wait until you chair-bound and desperate to consider aids such as a mobility scooter. I have 3 prosthetic joints (2 knees, 1 hip) compliments of PsA, and another hip on its last leg. But that isn't the problem: my problem is the terrible and painful damage that PsA has done to my feet. And my feet (which my rheum calls "a mess") are what severely restrict my mobility. I realized a few years back that, without a scooter, I was ... well, I was stayin' home. And I didn't want to stay home: I knew that the damage that staying home would do to me would be just as bad as the physical damage of PsA. I can and do walk, but my limit is about ten minutes before the pain sets in and the fun is over. Do I like using a scooter? No, not at all. But oh, I LOVE my scooters (I have two). Get your head around the concept!

And yes, Seenie (a Canadian) has travelled the world on her scooter. I even went and spent a day with our own Sybil on my scooter! I will also say that I love going to the UK because it's so wonderfully accessible, both physically and socially. Here are a couple of mobility scooter blogs that you may like:

Fashion Disabled in a World Fashion Capital and

Travels with Daphne

Daphne is scooter number one, a sturdy, fairly heavy model. I recently acquired a lightweight "sexy" model that I have named "Sybil".

Darinfan, welcome here. We're glad that you've joined us, even if having PsA sucks.

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Thanks again for the replies, which are much appreciated. I can sympathise with the feet - although the knees were stiff as boards, it was the tendons in my feet that stopped me going out for quite a while, although my current medication appears to have helped in that area a great deal, and they are not currently a problem, thank goodness. It's also interesting what is said about getting a scooter before you have no option. I think there is some sense of "giving in" and "guilt" in using them when you know you can still walk to some extent. However, like Seenie, I can only do about ten minutes before needing a good rest. Sadly, I can't get one until I move house - I am currently still in my flat and have to negotiate a significant number of stairs, hence why there is nowhere to put a scooter as yet. But I have told myself that I have to pluck up courage and move within the next few months so I can get out more often and be able to have a scooter and keep it safe.

Sybil, I totally know where you're coming from with the lumps and bumps etc. I am exactly the same. The ESR result really put the wind up me and I was self-diagnosing myself with all kinds of things, especially when the night sweats started at the same time. However, in the short while I've been here, I've read of lots of members who have had their results in the same high region, and that at least puts my mind at rest to some degree. I'll just be glad when the next test is out of the way in a couple of weeks and see that it has gone down. To be fair, PSA aside, I feel quite well at the moment, so the constant sense of dread regarding health makes little sense to me, although it's not just a PsA thing as I had it for a year or two before then. For me I think it's a new way for the bipolar to rear its head as much as anything.

Anyway, thanks again for the replies and hopefully we can chat some more as time goes on. :)

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I think there is some sense of "giving in" and "guilt" in using them when you know you can still walk to some extent.

For sure, Darinfan! I still have that. I have a certain amount of guilt every time I ride into a restaurant, park and walk to the table. Part of it is that I walk completely normally, thanks to the fact that I do a strenuous physiotherapist-designed exercise program in the pool three times a week, and I wear special (read: ugly) shoes and industrial strength orthotics. So I get off my scooter, stand up straight, walk "properly" to the table and sit down normally. I know people are watching and thinking "WT...?". I still have difficulty with that one, and until I am a paraplegic (which I hope will never happen) I think I always will.

But the fact remains: if I don't use my scooter, I probably wouldn't get to the restaurant, or if I did, I'd be too wracked with pain to enjoy my meal. And then I'd go home and have to take pain killers to be able to sleep. I guess the other people have a problem! I do sometimes think I need a t-shirt that says "IF YOU ONLY KNEW!"

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I do have to use a stick, but yes I know what you mean - although I guess we're all guilty of judging in these cases, especially before it happened to us. When I move house I will certainly get hold of one, otherwise I will forever be on a piece of elastic that stretches about a quarter of a mile from my house and no further!

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Hi darinfan,
Ugh it must be so challenging with being bipolar and having all the arthritis pain and other worries!
I was going to tell you not to worry about the biologics, because they are very safe--I'm one who avoided ALL of the prescription PsA meds from Sulfasalazine to MTX, and not until I found this online support group could I be convinced that I needed to stop fearing the meds and fear the PsA instead. That's when, after almost 8 years of being diagnosed, I finally started taking Enbrel! I have really no complaints or worries about it other than my white blood cell count went below normal for awhile but now it's back in the normal range. During the time my immune system was low, I didn't catch any bad bugs, and I'm around sick people a lot!
I hope you find the right meds/biologic to get your pain under control, and maybe it'll help control the bipolar symptoms too. My youngest daughter has been on sertraline for many years now for depression/anxiety, and many times she's told me she thinks she's bipolar. I'm so in denial about that because I just don't want her to be bipolar. She also has been having terrible fatigue and achiness and now I'm worried those symptoms could be PsA or RA.

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Thanks Grandma. I guess my biggest problem isn't so much the side effects as the continual tests - not sure why, it's not the test I hate but the wait for the results. I know they said there was limits as to what medication I could have due to my liver being slightly out, although nobody has yet worked out why the liver function test is out as I've had an ultrasound a year ago and it was all clear. The main theory is medication for the bipolar, which makes sense as I've no symptoms etc.

As for your daughter and bipolar, it's not as bad as it sounds. I know bipolar is portrayed on television and film as people who are normal one minute and then suddenly turn into axe-murderers at the drop of a hat, but it's not really the case. But, as with PsA, it's a condition that effects everyone in different ways. It's like there are a hundred conditions, but they all have the same name! For me, my depressive phases are as you'd expect, but my manic phases result in lack of sleep, or working at a very productive rate (my work these days is mostly writing of various kinds), or suddenly getting the urge to see people (which isn't like me). But before I was diagnosed, my manic phases generally involved spending sprees and ended up with me owing enough money to buy a small house and going bankrupt. That hasn't happened since it's been diagnosed and under control, I'm pleased to say. Fatigue and achiness (and lack of concentration if she has that too) are certainly signs of bipolar as much as they are of PsA.

For me, the worst thing about bipolar is the prejudices that still surround it. It can't be seen, so some still think it's just made-up or something. And others have got their education about the condition through the awful portrayals of it in the media. I know it's a strange comparison, but I'm a gay guy and have no fear or worries about how people will react to that nowadays - and yet I still never know what the reaction will be to "coming out" as having bipolar. Slowly but surely things are changing, though.

I wrote an article about recent portrayals of bipolar on TV and the problems they cause for an academic journal last year. It's a little dry (academic articles are, sadly), but if you wanted to read it, I can always send it to you.

But don't fear bipolar - fear not having it diagnosed! Hope that helps.

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Hey darinfan, please send me the article you wrote--can I also forward it to my daughter? I guess I'm one of those who doesn't know a lot about it and it would help me and my daughter and her siblings to know and understand this and maybe figure out if it's what she has. A boss I had years ago was bipolar and he'd go from a happy, silly, fun-loving guy to weepy and suicidal in the same day. It was so scary! I worry my daughter, who can be happy and upbeat if things are going great but fatigued and depressed when she doesn't have something fun to do, will reach a breaking point. She doesn't have psoriasis but she has had a lot of trouble with achy joints throughout her teenage years--she's now 24 and no better.

Well, anyway, so much about that--I appreciate your feedback.

Back to you--yes, tests are annoying and it sounds like you've had more than your share of them. I hope you get some answers soon. You probably already know biologics don't harm the liver (or any other vital organs as far as I know).

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There are three basic types of bipolar to my knowledge, although everyone varies. One that is depression-heavy,one that is "manic"-heavy, and one that is like the boss you describe that is known as "rapid cycling." That's the more unusual one, but mine falls into the category too. I can be full of life one minute, and then really tired the next - and back again. You get to learn to hide it, or people just keep asking questions - especially if it happens when I'm teaching or some other inopportune moment. I've added you as a friend - which I need to do in order to send a message apparently (with the article) and once you've accepted I will get it off to you. It's pretty much a discussion of how it's portrayed vs how it really is (for me at least). It might be of some use, at least.

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This is so interesting! The only person I see regularly who has bipolar just seems quite normal, whatever that means. I keep waiting for him to empty a sack of £50 notes out the window, but unfortunately it's not happening. That was always the stereotype for me, but it's long gone now and actually I think I must have got a bit of education from the media .... individuals telling their stories especially. As for that one person I know of with bipolar, it has occurred to me that there are similarities with my PsA .... I don't have flamboyant flares anymore, he doesn't seem to struggle with extremes of behaviour or extreme emotions & we both have the drugs to thank for keeping things on more of a level.

In my own family, on my dad's side, there's quite a history of wild extremes, often amounting to tremendous energy and enthusiasm alternating with severe depression & addictions & that has affected most of us to varying degrees. Sadly, a fair few suicides. There was always muttering about 'manic depression' as bipolar used to be called but I'm not sure if anyone had a diagnosis or indeed any treatment of worth, though some endured brutal so-called therapies. It has taken a lot of reflection for me to realise that my relatives had mental health issues that might well have been controllable and very liveable-with these days, it was glaringly obvious but there was no discussion, just the 'muttering'. It certainly looks as if things are changing .... at last.

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Yes, things are much easier to control these days - although access to help through counselling etc is woefully lacking through the NHS system in the UK due to over-demand. The government has made a big deal of putting money forward to tackle this, but it probably wouldn't have happened if they hadn't cut the funding for mental health service in the first place. I guess financially, it will mean the funding in 2020 will be the same as it was in 2010. Oh, politics. Don't get me started! ;)