New and Lost in Life (Psoriatic Arthritis)

havinghope

Hiya,

I am a 32-year-old guy who got officially diagnosed with psoriatic arthritis about a year ago, after suffering from it since early 2020.

Ever since the diagnosis, it was all about holding on to the hope of miracle cures. Maybe the Methotrexate will make it all go away, oh that didn't go well..maybe it's Lefluemonamide is the one!.. Fast forward to today, I am on biological injections every 2 weeks and Lefluemonamide every day.

The biologics have contained the swelling, allowing me to walk a bit more. But I am suffering from nerve pain. Turns out, I got a spiled disc behind my neck which is pinching on several nerves and might need an operation.

Just to add to that, I get random swelling, like fluid buildup (but no pain), pinch pains (hands and feet), and stiffness every day.

Feels like its never ending. The consultant is not much help. As far as they are concerned, the "treatment worked" as I don't have painful swelling like before.

I am tired. I am exhausted by all this. It's affecting every aspect of my life. I am up this late due to pain. It's affecting my relationships with friends and family.

I was wondering if I could hear from others who have gone/going through the same frustration, feelings, and thoughts.

How did it affect your relationship with your partner? If possible I want brutal honesty!

I have someone significant in my life that I started to date just before the diagnosis. I don't want to drag them more into this mess.

Thank you for reading this and sharing your thoughts.

Ellen

Hi to you too @havinghope a very warm welcome to the Online Community. I'm so glad you have found us and am sure our members will be willing and able to support you. I have quite a lot of information which I think might help you a little so I apologise if this is a longer reply than l usually give to new members.

I had noticed your post was made at just after 3am in the early days of my own Arthritis journey I was often awake at that time. This is clearly having a huge impact on you and would urge you to give our helpline a call if you feel you could:

https://www.versusarthritis.org/get-help/helpline/

It's quite possible that you have already looked on our main site and read this. Often when we are diagnosed with a life changing long term condition such as Psoriatic Arthritis (PsA) we look for 'miracle cures' to take it all way and restore life to how it was. This is so normal many of us have done this including me. I didn't have this information back then to read, but maybe it will help you:

https://www.versusarthritis.org/news/2021/august/how-to-adapt-when-you-ve-been-diagnosed-with-arthritis/

I imagine you have read everything already about your condition, but maybe not this:

https://www.versusarthritis.org/news/2022/may/all-about-psoriatic-arthritis/

You also mention that you have a partner who you 'don't want to drag into that mess'. It is more than possible that your partner wants to be with you whatever the ups and downs which come with your relationship. There are many people on here who have fabulous partners, hopefully some of them will come along to tell you their own stories. In the meantime, do read this:

https://www.versusarthritis.org/news/2022/february/relationships-and-arthritis-how-to-strike-a-healthy-balance/

My very best wishes

Ellen.

frogmorton

Hello @havinghope

I am so sorry you are having such a time I don't have PsA, but do have another inflammatory arthritis. There are plenty who do have it @jamieA erm @Grace111 to name a couple off the top of my head.

I will tell you a bit about me and hope you can relate.

First of all I was also up at unGodly hours too in agony and also fear I think at the beginning. Like you my relationship was fairly new and my (now husband) loved doing stuff - travelling etc. I also had young children. I didn't want to hold them back or embarrass them. I used to be the fastest Mum at the school gate😕I visualised myself immobile and a wheelchair user a liability to them all in a matter of weeks.

I was terrified tearful angry resentful and probably more. Why me? (since then I have of course been able to say why not me, but just then it felt so unfair) why not that horrible person at work for instance.

After a time of refusing to make plans (incase I let people down) and becoming an arthritis bore I found this place. It may not be for you, but it was for me. Everyone was just so lovely they replied. I cried. They cared. I cried some more. I didn't want to be a person who has arthritis, surely that was only a disease of the elderly? I rang the helplines (more than once) and cried some more🙄

I got my head around it and found a fair few famous people also had Arthritis and a lot of the people here are far far younger than the stereotype as was I.

My advice is to be a bit kinder to yourself accept that this is **** and that you do not deserve it. Get informed (reliably sites like this) and talk to us. Talk to your partner ask how they feel mine has been wonderful. Give them a chance don't give up on your relationship I am sure you bring much more than PsA to it!

Bear in mind that any long term condition like this will impact on our mental health. Many of us here take have had help with our mental health and will freely admit it.

Consider seeing another Rheumatologist if this one is not a good fit for you. Many of us have done so - it is ok.

I'll shut up now, but please do keep talking to us we'll help if we can

Take care

toni x

jamieA

https://community.versusarthritis.org/discussion/58701/new-and-lost-in-life-psoriatic-arthritis

Hi @havinghope

I know everyone is different so I can only offer my experience since my PsA occurred. I'm a lot older than you - I'm retired - now 67 - and started having problems when I was 64 and was diagnosed with PsA at 65. I've also got bulging discs in my neck and lower back. I feel I could have written your post regarding symptoms almost word for word 15 months ago.

My first rheumatologist wasn't helpful so I asked both him and my GP to be referred to another consultant which happened early this year. She has been significantly better in both listening and communicating with me and is proactive - I feel she is on my side. If you are unhappy with your consultant maybe you could ask for a change.

For me the adalimumab biologic Amgevita has made a significant difference - though I still take both sulfasalazine and methotrexate as well. I'm not back to the way I was but I've adapted and at least I'm functional and I now rarely need painkillers. I do the exercises the rheumatology physio gave me, use capsaicin cream and lidocaine patches (might be good for your nerve pain and disc problems) when needed and wear a knee support and compression gloves. Before this happened I used to hill walk with my dog - I'm now back to walking 50-60kms per week but on flat surfaces. I enjoy being able to cook again - but have a good number of kitchen aids to help. I'm also getting back to my hobby of photography though I'm having to adapt my way of holding my cameras. I'm back driving and was able to share the 500 mile round trip to see my daughter for a week a couple of months ago. I've even been able to do some DIY. I'm presently training my 14 week old labrador puppy.

I still get bouts of swelling - mainly my right wrist and forearm but it goes down after 2-3 days. According to the consultant that's enthesitis. I know to rest the day or 2 days after MTX as it leaves me really tired. But at least I've not been in hospital for a year now, my rheumatology appointments are now 6 monthly and I've had no need for steroid injections since February.

I've found friends and family very understanding and supportive. I've found this site very helpful for information and direction. I've also spoken to the VA helpline and the staff member I spoke to couldn't have been more helpful and supportive.

I hope you manage to find a way to get through this period and can find a level that allows you to function in as best a way as possible.

Arthuritis

@havinghope I am so sorry that you are now a member of this rather exclusive club. Rheumatoid arthritis is rare in the UK, only around 400,000 diagnosed patients, of which only 100,000 are male. Like us. Here you will find lots of kind advice and a sympathetic ear from your fellow sufferers. I’ve had it for 12months now, and I look back wistfully at my “pre-RA” life, but only for a little while. I used to be a gym bunny and weightlifting was my thing, as well as an avid DIY’er. The first 4 months, after the initial swollen finger that scared me enough to push past dismissals and get help, were the worst.

Walking required a stick, opening jars or even using a peppermill was impossible, as was opening cans, and my taps constantly dripped because my joints had become so weak that I could not turn them off. I got to this website and researched the condition and realised treating aggressively, promptly and making adaptations early in the disease gave most people the best chance of success and saving your joints. So I took all of the great ideas from this site, Electric can opener, electric peppermill, bottle lid opener, changing taps from screw type to lever are all a great help. I have been lucky in that a combo of HCQ, MTX & a helpful Rheumy have allowed me to return to work and made life reasonable. Weightlifting is out, but with the meds I was able to recover sufficient joint strength & function to resume my DIY hobby, which gives me great satisfaction.

The pain & heat was intense , before MTX kicked in and damped down my immune system. Now I am aware its there, and if I get too warm & comfy my knees go red with inflammation, so its often cold showers or staying slightly cool and I am ok.

As for dating, I hear you. As Toni advises, its best to talk to your prospective partner early, this is significant, and they need to know, but also neither one of you wants to find out later its not going to work out, after putting a lot into the relationship. It also is for your benefit, to know who will stand by you, in sickness and in health. Unfortunately my diagnosis proved too much for my ex, who’d only seen me as super gym bunny and arthritic me was too scary for her. That’s ok, we remain friends but no more. Can’t blame her, she didn’t sign up for this, and its better that I know now whom I can count on.

Try to keep a wide circle of friends, and know which ones you can count on, and which are fair weather friends best for smalltalk. You’ll need to know who will visit you wearing a mask voluntarily, tell you in advance they suspect they may be coming down with something, or help move your furniture to adapt to your condition. Some of my beer buddies faded away, scared as the condition reminds them we are not invulnerable, not even weightlifters!

As for treatments… not much progress has been made given the gold standard is a 50 year old chemotherapy drug, and while specific diagnostic tests have been developed, the cause for why some T cells go rogue, why they attack your own tissues or what about those tissues triggers them is not well understood, but it is thought to be citrullinated proteins that occur as a result of infection set the scene, and months or years later T cells see this citrullination and get triggered into attacking.

At the heart of it is money, it is a relatively rare condition, and there is not enough money to justify a mighty push into research, and perversely, the biologics trearment drugs industry is worth $47bn per annum world wide, so in the words of a senior Rheumy, pharmas have no incentive to find a cure when lifelong expensive drug treatments, even with bio similars, is so lucrative. DM me if you are really interested in the research side.

For now, its best to accept and adapt quickly and make the best of it, noting that the drugs we take dampen our immune system, so we have to be sensible about what venues and parties we can go to. Also we can no longer donate blood because of all the drugs we have to take. Stay positive and keep in touch with the folks here, they know what its like and the kindest group you can hope to meet, do take up hobbies that you enjoy but will not be limited by the condition.

simonjcelliot

for me the biggest part was getting medication that worked, I was given a few things I can’t remember now, the gin and tonic tablet? It did nothing, then I got sulphasalazine which stopped me sleeping and made me think everything in life was a pointless waste of time, as soon as I stopped it my sleep came back and my mental health improved massively… they eventually got me to try apremilast when it was approved probably in 2016 is and it’s been amazing.. I went from hardly able to walk to being able to walk a few miles, all be it with a couple of cocodomol to help foot and ankle pain but it was such a relief to start that drug…

i also still use meloxicam one e a week or so but it’s night and day compared to how I was from about 2010 to 2016… I was about 34 when diagnosed in 2010 and used meloxicam to help daily till I got apremilast… flair ups still happen but nothing like they were..

hopefully they get you on the drugs that work for you as it’s so good when they work for you

Chris_R

Hi @havinghope

Welcome to the online community glad you have found us as you can see you have already had replys and i have nothing else to comment the links you have will help a lot thanks to @Ellen and everyone else.

Take care please keep in touch and tell us how you get on and do chat on the forums.

All the best Christine

havinghope

Hi @Ellen @simonjcelliot @Chris_R @Arthuritis @jamieA @frogmorton ,

Thank you for your kind and supportive messages. I felt very emotional reading it all.

In a strange way, I am glad to hear from people who have lived longer with this type of condition and are still living life positively.

This week was particularly difficult for me. Had to travel from London to Birmingham, my first long-distance travel since 2020. It knocked me out for 2 days. I felt completely drained out of life! I kept wondering what's the point of this life. But reading your messages somehow reinvigorated me!! So thank you all from the bottom of my heart!

I have been scared to switch my rheumatologist as I feel vulnerable and don't know how they will react. I don't want to upset anyone. But they lack communication skills and showing empathy. They don't update me on what I should be doing, or report any test findings until I push them, and when I bring up my pain, they keep saying it's not a rheumatology problem.

I need to somehow build the courage to ask for a change. Do I just email my GP?

@jamieA, @simonjcelliot I am on adalimumab at the moment (every 2 weeks, leflunomide daily). It finally allowed me to start walking about 3 months ago. Until then, I had swelling under my right foot, near the toe joints and it was hard to walk from the bedroom to the kitchen. I have lost control of my last 3 toes, but at least I can walk normally for 30mins straight these days! I have recently started medical cannabis for pain relief.

@frogmorton I could relate to all the questions you mentioned. I am still in that phase I am afraid. I have finally reached out to a psychotherapist for help. Growing up, there was a lot of silly stigmas associated with asking for help for issues of the mind. What made it harder was growing up in an Asian family where my father's generation hardly spoke about their emotions. Took me a while to overcome it, and I am glad I reached out (here and to the psychotherapist).

@Ellen thank you for all those links. I am still going through them.

@Arthuritis it started with a swollen finger for me as well. Have you given up on going to gym completely? Is there any new research using the technique they used to make the covid vaccine? (CRISPR??)

@Chris_R thank you for your kind words.

Hope you all have a lovely weekend!

S

jamieA

https://community.versusarthritis.org/discussion/comment/700110#Comment_700110

Hi @havinghope

I would suggest that if you are looking to change rheumatologist to put your request in writing - both to the rheumatologist and your GP - that's what I did. It takes the emotion out of any discussion and will be put on your health record. My first rheumatologist sounds very much like yours - I don't know why people without compassion and empathy skills go into medicine. My local hospital where my rheumatologist is doesn't have an admissions department so every time I've been admitted it's to a larger hospital - so I've seen a good number of rheumatology consultants - both good and bad. After I put my request in writing - listing my reasons - I was suddenly offered a pain management clinic, a rheumatology physio one-to-one zoom service, rheumatology podiatry and an occupational therapist. So for me I think that approach worked.

I hope you are able to get a better service - after all it is the National Health Service. You are not asking for anything that isn't due to you.

Take care.

stickywicket

Hi @havinghope . Please forgive me for a short reply as I'm a bit pushed for time. I hope that doesn't make me sound unfriendly.

These points, which occurred to me are in no way intended to contradict anything the others have written.

1. You can ask your rheumatologist (or his/her secretary) to be copied in to all their reports back to your GP. My hospital does it automatically but others have to ask.
2. Your rheumatologist clearly lacks 'patient empathy skills'(?) but is right that pain isn't their remit. If your blood tests show that the disease is under control then the rest is the province of your GP. (Physio and a Pain Clinic or just plain pills spring to mind.
3. How does my RA affect my relationship with my partner? I'd had it for 3 years before we met. With some remissions but also, after meeting him (no connection!) some bad flares. We've been married for 55(?) years. Two sons. Two grandsons. Good times, bad times. and difficult times, just like everyone else. I think it's essential to share difficulties without moaning about them. To accept that, sometimes, they will have to do things for us that they wouldn't normally and therefore to cultivate an attitude of looking for areas where/how we can be useful to them.

Good luck with it all. Keep talking. if we shut it all in then we shut ourselves away from others. Try to be optimistic. We have much to be optimistic about.

Arthuritis

Hi @havinghope Re gym - My DIY projects are challenging enough now, so I don’t really need the gym, which saves on membership. I have to save my joints so I still do some walking, but there’s no serious heavy lifting ie 100Kg weights are history!

Now I might potter round with 15Kg bags of sand & concrete or operate my SDS drill/pounder as I try to re-lay my cracked garden path etc, install exterior insulation and design a solar array in case things get really bad!

On research… even if there were a breakthrough today, it would take years to go through the funding—>test—next phase funding—> test stages, so its best to find a good rheumy and make the most of the situation. @stickywicket has the best experience and pragmatic guidance, we’ve been dealt the cards we have to play so its best to adapt as best as we can. Your rheumy should do his best to help you to where you are no longer in great pain.

havinghope

Good morning!

@jamieA that's a good shout. I don't like having conversations that could be confrontational. Due to this, some conversations happen too late or never. Letter sounds like the right approach for me. Didn't even know they are supposed to help arrange all of those!!

@stickywicket thanks for those insightful points! It feels good to know there are people out there with successful relationships. Doing my best to stay positive and just keep moving ahead.

@Arthuritis that's a good approach to staying fit. I am trying to lose weight but worried about gym workout effects on my joints! For now, I am trying to get back into my hobby of walking and taking landscape photos.

Have a lovely day everyone.

frogmorton

Good morning @havinghope

I am so glad this forum is helping a bit I know it can't fix you, but just hearing from people who understand and might have some ideas which help is wonderful isn't it?

Like you I am totally non-confrontational regarding myself - when my youngest had cancer I was quite different. I hope you will look at taking Jamie's advice.

I hope you have spoken to your partner and had some reassurance from them that they are not planning on disappearing anytime soon. You are far more than a person who has PsA.

I tend to only do the gentler exercises on here and a daily walk Arthuritis is doing amazingly, but I am a wimp!

Getting back to doing a hobby you enjoy is such a good idea distraction is a huge part of coping with all this.

Sending my best

Take care

Toni x

jamieA

https://community.versusarthritis.org/discussion/comment/700193#Comment_700193

Hi @havinghope

I did have a bit of a confrontation with my first rheumatologist after I handed my letter to the junior doctor he had sent in his place for my 3rd appointment with him. In the first two appointments he'd never moved from behind his desk so he had never physically examined me. When the junior doctor took the letter to him whilst I was still there he came into the treatment room and seemed to be in panic mode, he examined me and fired off a number of directives to his staff to refer me to the various support departments. He also - without telling me - put me on the path to being prescribed biologics 4 weeks later. So the letter did have a significant effect as far as I'm concerned. I'd read somewhere that patient's letters had to be kept on your records. The good thing about the letter was that I'd been able to put it together in the calm of my home ensuring all the points I needed to make were listed so I didn't need to remember and state them at the appointment. As I said previously my new rheumatologist is significantly different - very much better.