Thankfully I've held off on my 1st post, now I'm just confused

Welcome Greetings and Introductions
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I've had psoriasis since my early teenage years, now at 44, I have it on elbows, knees, lower legs, scalp, face, torso, nails - I manage it as I can with various creams and potions but usually have scales, redness on these areas. As I haven't been referred to dermatology for at least 15 years, I have assumed compared to others my GP has seen it's not so bad.


18 months ago I started getting a swollen left knee, I put it down to my late baby (planned at 42) and being back on my knees and dealing with a new born baby on a mat on the carpet for nappy changing, bathing etc. also the considerable weight gain I always experienced with pregnancy. I did go to my GP when it became unbearable and I was unable to bend it and she agreed it was probably something called housemaid's knee but due to my psoriasis she referred me to rheumatology anyway. I attended the appointment by which time my knee had went back to normal, the Rheumatologist was very nice, looked over my joints and said the drugs we use for arthritis are very potent and can be damaging so we will hold off and see what happens. That was May 2015.


Since that appointment, and no I'm not exaggerating, my life has been a round of stress stress and more stress. In September 2015 my Father was diagnosed with cancer so I had to start assisting him with hospital appointments, chemotherapy, hospital stays, shopping, etc. In October I had to put my Mother into respite as Dad was her carer and I couldn't manage them both as I work full time in a fairly stressful, busy job at management level and I have 4 kids ranging from 18 to 2. In November my Husband started a 12 weeks residential course where he was only home at weekends. In December he came home one Friday evening and one pupil was smaller than the other (Horners Syndrome) it turned out to be a carotid artery dissection but thankfully we didn't understand the danger he was in from a fatal stroke until after it was all over and healing (he is fine and back at work). In January my 18 year old son had a 6 hour operation on his spine for scoliosis to straighten his spine with rods and bolts, we had known for less than 18 months what was wrong after a wrong diagnosis, the operation was a complete success. I was at that stage caring for my Father and my son and any aches and pains I had were not given any recognition as I just didn't have time. April 2016 my Father passed away, in May I took my Mother out of respite and found her a lovely sheltered housing complex and physically cleared their home and put it on the market. I knew at this point my health had suffered through all the stress, running around, missing meals, guilt at spreading my self so thin to everyone, grieving for my Father.


I suffer from recurring UTI's and In May 2016 I had a very bad urine infection, and my legs become extremely sore and my right knee started being the focus of pain. I went to my GP for antibiotics and mentioned to her about my legs but I've now become accustomed to all the aches and pains and put it down to all the stress of this last year. She read the previous rheumatology which said undecided wait and see and said I think we should refer you again. I heard nothing for ages then I received a phone call on a Thursday afternoon at work in late July asking if I could go to rheumatology on Saturday AM . I met a doctor who told me he was a locum so I assumed they had drafted in extra cover to whittle down their lists, hence the rather hurried appointment. He went through my history, previous knee issue and asked to examine my knee, he said yes it's very hot and swollen. He said he thought I had psoriatic arthritis and offered an injection either in my knee or into my hip which should help all my aches, as at times it's my left thumb area that is most sore I opted for the system injection. He gave me 2 leaflets one on sulfasalazine and one on methotrexate and advised various things about them both and said I'll have to do a chest xray and get some bloods then I'll write to your GP, you can then choose which DMARD you want to try and we will see you again in 6 months. I left a bit shell shocked and tried to make sense of it all by reading forums such as this.


I heard nothing from my GP, so after 3 weeks I called them and had the appointment last Thursday, she called up the rheumatology letter at my appointment, read it and said, yes they think you have could possibly have mild psoriatic arthritis but nothing major and recommend ibruprofen regularly (daily) and they will send out another appointment in 9 months time. I questioned this and said that I was surprised and relieved not to be having a choice of these DMARDs but that he advised I'd be coming to choose this. She said oh no we never prescribe drugs such as that it's always the hospital. ok fine. I said how were my XRay results, so she called them up and said bloods were fine, chest Xray was fine, knee Xray showed minor damage but to be honest anyone of your age getting a knee Xray would show damage so don't fix on that it could be arthritis. Then she said I understand the knee XRay but not why he done a Chest Xray for this, at which point I realised she didn't have a clue and said, they always do bloods and a Chest Xray before prescribing DMARDs but left as there was no good in discussing it with her anymore.

In Conclusion, Im not mistaken about his advice, he did give me the steroid injection, he gave me the XRay and bloods but I am assuming when they looked at the XRay it wasn't as bad as they thought it would be and have decided another "Wait and see" is the best option. Although I'm not opposed to this, I do feel all the way to next Apriil 2017 which is my next appointment does feel quite a long time to have all of this daily pain and living in fear of either knee swelling up so badly again. Since Friday I have taken the stomach tablet and 3 x 400g Ibruprofen daily that she has prescribed, but I feel no relief really in general aches. I still feel the high pain in my left wrist/thumb area and overwhelming pain when I kneel too quickly or the wrong way. Not to mention the fatigue.

Reading over posts it seems very difficult to get an absolute diagnosis and drug that works, but goodness I feel like I may be standing in the shadows of a very huge mountain to climb. Sorry this has been so long.

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Welcome here, GM. No need to apologize for the long post: sometimes just writing it all down helps get the whole situation into clear perspective. Indeed, as you say, getting an absolute diagnosis can be difficult. Another member, just yesterday, referred to PsA as a "sneaky bitch". PsA can be a very slippery fish to catch. There are obvious cases, and cases that are clearly severe. But then there are the others, like many of us: a little of this and a bit of that. Unless the practitioner has a fair amount of experience in assessing PsA, and then does the diagnosis very very painstakingly, it's easy to underestimate the severity of a patient's disease. We've seen it many times.

You've got a great deal riding on this diagnosis, and getting the treatment right ASAP: with a toddler, and three other children, your loving care as a mother is going to be in demand for many more years. PsA, when mild, can be little more than a periodic annoyance. But when severe, it can cause joint damage, and quickly. And we aren't even talking about the terrible fatigue and depression which many of us have suffered. Severe PsA can completely transform your life, and not for the better!

Are you in the shadow of a mountain? Who knows? You may well be. Or perhaps your disease is mild. I think, though, it's important to know where you stand. To be honest, it sounds as if your rheumatology practice isn't all that well organized, and you might want to consider finding a practice that can give you consistent care and long term support. This is going to be a long relationship. We have several people here who are from Scotland, and a couple of UK moderators, and I'm sure they will share some local knowledge with you as well.

In Book Reviews, I recommend a patient information booklet which a lot of us have found very helpful. (That link is for an e-book, but it comes in paper as well.) One of the things that has stayed with me from reading it is that early and aggressive treatment gives the best prognosis.

What kind of a welcome is this to give a new member on their first post? Gosh, GM, I'm sorry ... but I hate to think of anybody else going through what this disease has put me through, least of all a Mom of four. Is it all bleak? Not at all! With the prompt help of a good rheumatologist, good therapy and lifestyle management, many people live very full and busy lives. Also remember that the people who tend to be here are the ones who have seen the worst that PsA can do. We have scores of members who have come here newly diagnosed and scared, and then got the medical management that they need. They disappear and rarely come back because they are too busy living life to spend it on a support board. Those are the ones you don't read about here. That's what we'd like to see happen to everyone! Sadly, though, for some people that never happens.

We're glad that you joined us, GM, and thank you for your introduction. I hope after this earful you're glad that you joined us too! ;-)

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GM, how are you doing today?

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You certainly have a lot going on. I am surprised that you didn’t get a cortisone injection.
I also have just gotten used to the pains and have had them see my swollen knee and say they’re going to inject that. I usually first think, I can do without, but, after getting the first one, now I’m for it. At least it gives you a break in the cycle.

Maybe you should call them back if you’re in a lot of pain. Otherwise they may think 2 Advil did it for you.

Sorry you’ve had so many problems in a row.

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Hello there GM, I'm sorry I'm so late responding to this.

I think you are right in your understanding of what the rheumatologist outlined based on how I understand and have experienced the UK system to work.

The steroid shot will have been to try to give you some immediate relief as a stop-gap and the chest x-ray and bloods are to check that you haven't anything like latent TB or another underlying problem which would stop you from starting on a DMARD. The rheumatologist will, in consultation with you, agree what to start you on (from either mtx or ssz as that is what they gave you info on) and this is usually in a follow-up consultation once they have seen all the blood/x-ray results. Sometimes they give you a NHS prescription to fill at the hospital pharmacy and sometimes they give you enough to start with and then get your GP to do the repeat prescriptions and monthly blood test monitoring. But some areas manage it all via the rheumatology department and specialist nurses. It seems to depend on local arrangements. It does seem a pretty long wait until next April to get this ball rolling so why don't you ring the hospital and find out whether you can/or what needs to happen to get that appointment brought forward.

If you can't get this moving through the hospital and want to progress before April, which if you're in pain and struggling day to day of course you would, can you afford to see your/a consultant privately? Their secretaries are great at gathering copies of the NHS consults/bloods/x-rays etc for your "private" file so they still have everything in front of them.

When I did this way back when, he gave me a private prescription for a months worth of mtx (it was only a few pounds, not much more than paying the NHS prescription charge) and wrote to my GP with instructions on what he wanted prescribed and monitored going forward.

I hope this helps. Sometimes it's just knowing a work-around/work-with the system. Hopefully Scottish devolution hasn't changed the system for you too much from old. Shout if anything doesn't make sense or you have any questions. JulesG

6

Hello there GM.

The pattern of your joint issues so far sounds very similar to mine as it was between 2010 - 2012. With one swollen and increasingly painful knee (which did go down for a few months at first) I was sent to see an orthopaedic consultant in 2011 & he had it x-rayed. X-rays showed some osteoarthritis on the patella and as I didn't at that point have fatigue etc. he thought the swelling was due to OA, despite the significant swelling. I was prescribed Ibuprofen. By 2012 I was feeling very unwell with crushing fatigue, chills & low grade temperatures, both knees were swollen, I could just about walk but not always, left wrist and arm were too stiff and painful to move and my ESR was raised at 66. At that point I was referred to rheumatology and was diagnosed with PsA in about 10 minutes. I too had a steroid injection but was also started on a short course of oral steroids and Methotrexate.

We're all different but I'm mindful of how poorly I became quite quickly. That phase lasted a long time, I felt that the disease had 'set in' and so was difficult to get under control. Therefore I too think that you'd do well to try for an earlier rheumy appointment. Hopefully your disease (whether it's PsA or not) will be mild but seems to me that bringing the appointment forward would be better for your state of mind and open the door to prompt treatment with DMARDs, if necessary.

You don't mention blood tests. Have you had / are you having any? PsA inflammation doesn't always show up in blood tests (ESR / CRP) but it can do and things like raised ESR or CRP and visibly swollen joints can clinch a diagnosis and make the way forward simpler. If any joints swell, if you feel more unwell, even more fatigued ... anything at all, then go back to GP to at least register what is happening.

I'm a bit confused (you too probably!) about who is meant to be doing what. Did you think that your GP would prescribe DMARDs? Almost sounds as if that was what the rheumatologist was saying. I'd definitely phone the rheumatology dept. to ask whether this was what was meant to happen.

I'd say don't worry too much about how confusing all this is (easier said than done!) because it so often is initially. Shouldn't be, but it is. Over time the picture is likely to become much clearer but persistence and self-education about PsA really help with that. I am sorry to hear that so many sad and worrying things have happened in your life recently, I hope the future will be a lot brighter for you and your family.