Newly diagnosed

Posted Sat 20 Feb 2021 17.29 by Hannah

Hi everyone! I'm 32 and after two years of tests, last month I got diagnosed with PSA. With covid, my appointment to choose medication is on the 10th March so two months after my diagnosis. I suddenly developed pain in my left elbow two years ago and could not straighten it, I also suffer with psoriasis on that elbow, ankles, and top of bum/lower back. Recently my right hand has been so swelled and sore too. I have to choose between Sulfasalazine or methotrexate. I've been doing my research and I've seen quite a few people mentioning that the methotrexate injections seem to be a good option. (I'm completely new to this so im just going off the majority on what I have read). What I am really anxious over is loosing my hair and feeling sick. I guess I've joined this forum for some support as I just feel really lost with this diagnosis. Hannah

Posted Sat 20 Feb 2021 17.46 by toothlady66

Hi Hannah I was diagnosed with PsA 2 years ago and had similar issues to you in the same body areas .I started methotrexate 10 months ago on 10mg a week and have slowly increased it to 20 mg and I must say I feel much better and nearly normal .I have not had any ill effects from the methotrexate which I take orally . I suppose we all react differently but for me so far its been successful and it took me a while to take the step . I hope this helps .Good luck!

Posted Sat 20 Feb 2021 17.55 by Hannah

Hi Thankyou so much for replying. Wow that's amazing that you feel much better! I broke my back 8 years ago so I know what pain feels like but psa sometimes feels unbearable! Thankyou for giving me some hope :)

Posted Sun 21 Feb 2021 17.46 by Sizzy
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.

Hi there. I was on methotrexate years ago and did have significant hair loss. However, they started me on iron tabs and it did improve. One rhuemo consultant I saw a few years back told me to also take Omega 3,6,9. He said it works better than ibrofen and does not have the damaging effect on your body. Also speak to your Dr first though.

Posted Sun 21 Feb 2021 21.09 by Boo

Hi Hannah, I’ve been on methotrexate for nearly two years and thankfully I haven’t experienced any major hair loss, this was something I was also nervous about when I had to decide on treatment as there was lots of side effects to methotrexate, however since taking it it really has massively improved my symptoms. Good luck xx

Posted Mon 22 Feb 2021 04.12 by otwoseventooo

Hi Hannah, I think I belong to the same basket - PsA, ankle, fingers, toes, lowerback and upperback. methotrixate inj. (weekly one dose for 4 months) worked good for me, almost normal and I stopped medication without therapist advise which proved bad, I am now back on Mxt 20mg/week, feeling better. Hair loss - not much on me. Care for no processed food, more antioxidant rich food, minimise salt, try to stay fit are the general reminders i was given. best wishes. Thanks.

Posted Wed 24 Feb 2021 06.42 by CBMan

Interesting to hear so many replies from people on Methotrexate - the opposite for me. I was diagnosed about 13 years ago and have been on Sulfasalazine for most of that. It has worked pretty well for me, apart from a few flare ups I have largely been back to normal since I found the right dosage. About two years ago my Rheumatologist suggested that I try Methotrexate, so I came off Sulfasalazine and started oral Methotrexate (with folic acid). Within three months I was in significant pain, struggling to walk and only able to function with substantial amounts of ibuprofen. Blood tests also showed that I was starting to get liver problems. I switched back to Sulfasalazine and am now nearly back to normal. The lesson I take from this - and it is backed up with what I have heard from others - is that experiences with PsA and medication are very individual. What works for one person does not for another and you might have a few false starts before you find the right thing for you.

Posted Wed 3 Mar 2021 23.40 by SilentPea

Hello! My name is Katie, I’m 29 I’ve had psoriasis for 10 years and have been diagnosed this week with PSA. It’s hit me a little more than the psoriasis diagnosis and I’m scared of going on heavy drugs and also having deformed hands or feet as I love exercise so I’m a little down. I’m Currently having to choose between Methotrexate and Sulfasalazine. My question: Methotrexate looks like it has much more severe side effects. Is Sulfasalazine effective? Once you go on these drugs are you on them forever? Can you drink on them? I can’t find much online so would appreciate any of your own findings Katie (IG - Silent Pea ☺️)

Posted Thu 4 Mar 2021 02.04 by Boo

Hi Katie, I’m sorry to hear you’ve just been diagnosed with PSA, I felt so overwhelmed when I was told too. I’ve been on methotrexate for two years now and so far it’s been great for me, I’ve experienced very little side effects and it’s massively improved my symptoms. You are advised to drink no more than ‘government guidelines’ while taking methotrexate. I do still drink alcohol, I was only 20 at the time of diagnosis so I was socialising lots with friends and would still drink a lot to be honest (woops) Just be careful and make sure to always have your regular blood tests to check all your levels are okay! I would speak to your consultant and be honest about how you’re feeling, discuss the different options and see which suits your lifestyle best. P.s just gave your insta a follow, your food looks amazing! Bethany x

Posted Thu 4 Mar 2021 04.19 by otwoseventooo

Hello Katie I am 47 and PsA was diagnosed three years ago. I am finding PsA is funny, comes and goes with different signs and symptoms. I am on and off on Methotrixate & supplements. I am still learning/studying a lot from my own experiences. Methotrixate or Salfaalazine: Both of them are potent drugs and suggest you to follow guidelines of your therapist. I learned that liver is the one that process Methotrixate ( and all most all drugs or may be many drugs) my therapist is observing liver function carefully and adjusting the dose accordingly. You are checking about drinking - potent drug + drinking may increase load on your liver, hence I suggest lower your drinking gradually so you will be reserving your liver capacity for the possible continuation of potent drugs (metho or salfa) I gave up drinking ( and smoking) completely. Please care towards healthy habits and so you will have more joys. Thanks and best wishes.

Posted Thu 4 Mar 2021 06.52 by CBMan

Katie, you asked a number of questions. Regarding effectiveness: Not all treatments are effective for all people, but most people seem find a treatment that is effective for them. As you will see from the above thread some people found Methotrexate (I didn't). I found Sulfasalazine really effective (others haven't). It seems to be a matter of trial and error to find the right thing for you. However, once you do, there is every likelihood that you can get back to nearly normal in terms of exercise and activity. This is not true for everyone, but it seems to be true for most people. Before I started treatment I would struggle to get out of bed in the morning and it would take hours (and Ibuprofen) before I was able to move about with any comfort. Within a few months of going on Sulfasalazine I was back to running or cycling every morning, in the gym a couple of times a week, playing cricket and competing in triathlon. Regarding duration of treatment: At the moment there is no cure for PsA (and no real prospect of one that I know of) so you are likely to be on some form of treatment for life. It is likely that your rheumatologist will get you to vary your treatment regimen over time (there are some issues with being on the same medication for a long period of time). PsA seems to be more sensitive to diet than psoriasis generally so some people seem able to manage PsA through diet. It is worth experimenting to see what are triggers for you. For me citrus fruit, milk/dairy and alcohol seems to be the biggest problem. Regarding alcohol; I have never been advised that there is any issue with drinking alcohol while taking Sulfasalazine. However, any drug taken regularly stresses your liver so it is a good idea to moderate alcohol intake. I was told to watch my alcohol intake while on Methotrexate and I understand there is different advice in the USA (where you are told not to drink alcohol at all) and the UK (where you are advised to limit your intake). Having said that, for me alcohol is a major trigger for flare ups of PsA so I very rarely drink any alcohol - never more than one glass of wine and often months between any alcohol.

Posted Thu 4 Mar 2021 19.56 by SilentPea

Thankyou so much for your experiences, honestly so useful and reassuring especially to know if I have a wine or two I won’t instantly get liver failure. Lovely to have a space here to support one another. Interesting re - diet, I did a lot of dietary changes to get my psoriasis better a few years back so I guess time to get a lot stricter with them again and trial a few.

Posted Sun 28 Mar 2021 23.06 by Mc722

Hello all, I’m 29 and have been newly diagnosed with PSA. However hearing some of your experiences I may think my self a bit more fortunate! Strange one for me.. I dislocated my knee severely 5 years ago and ended up needing to have MPFL surgery (to reconstruct my Patella) swelling stuck around for years, finally decided to look into it, another OP and countless appointments later I was finally referred to Rheumatologist. Straight away he diagnosed me with PSA. I had actually only had Psoriasis for a year before that, on my scalp so came as a complete surprise. The consultant has given me 2 steroid injections. The first took the swelling down for 2 weeks. The second was around 6 months. Unfortunately the pain and swelling has come straight back. My knee is still swollen, struggle with it daily, pain can be unbearable. I also have pain in the ball of my foot and one of my toes is swollen which is apparently linked. My Rheumatologist was very dismissive of medication, so wanted to know all of your thoughts. Assuming that the medication you mention is part of the DMARD family? Do you recommend to go down the route of medication? Or more natural remedies (I am taking Vitamin D3 and Omega 3 daily as advised but don’t appear to be helping) Thanks guys - as I’m sure you all appreciate it’s nice to be able to talk to people who understand !

Posted Mon 29 Mar 2021 22.07 by CBMan

Mc722 You will have seen my comment on Sulfasalazine - which is one of the DMARD family and which I have found very helpful over the last decade or so. Like you, I have found steroid injections relatively ineffective - giving only short term relief. General steroid injections have been particularly useless, but injections into major joints have only helped for a few weeks. The exception has been a couple of injections into finger joints which have been very helpful. It makes me wonder whether that might be effective for your foot problems. Must at least be worth asking your Rheumatologist about.

Posted Mon 29 Mar 2021 22.28 by SilentPea

Hey! You’re 29 too- I also wondered if it’s covid triggered. Today I was prescribed sulfasalazine - I was allowed to choose between that and methotrexate. They pushed me to go on metho but I felt it was too aggressive and want to try sulfasalazine first. I’ve looked into natural remedies but I’m too scared of “joint erosion” so I’m going to try get it under control with meds first and then hopefully if it goes into remission reduce or switch to more natural options. As I don’t want my toes/knee to deform due to lack of treatment. Hopefully with treatment will help! I also get pain in the ball of my foot too.

Posted Tue 30 Mar 2021 07.50 by Mc722

Thanks - that’s a real help. I believe the scalp Psoriasis started at the end of 2019. But who knows it may be linked to Covid! I have an appointment booked with my doctor. It’s at least worth exploring all options now I feel. By looking at your responses. It appears I may have different results if I see a different Rheumatologist! Does anyone feel PSA has affected any other parts of their body? I had excruciating wrist pain every morning for about an hour at the start of 2020 (literally couldn’t grip a toothbrush) I also had pain in my jaw for a time which wasn’t as bad, then it went to my foot and that appears to be where it’s stayed Has anyone had a Fungal Nail infection with their PSA? I have it on my fingers and toes. When I went to get it checked by the doctors and tested, it came back as negative which we were all baffled by.. Now they think it’s actually Psoriasis of the nail.

Posted Tue 30 Mar 2021 08.26 by Sizzy
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.

Hi there. I think because with have an inflammatory disease, it can show in all different ways throughout our body. Mine moves, can be upper finger joints, toe, knee, constant back, thumb etc. I find new meds flare up something else as well. Some mornings my fingers feel huge and I can't move them for a while. Not very helpful, but nothing seems to be surprising any more x

Posted Tue 30 Mar 2021 08.52 by SilentPea

I used to have a wrist problem when I was younger which I thought was playing hockey and the impact of the ball on the stick, and my hips and back ache a lot but I had attributed those to having a desk job . My partner always tells me it's because I don't do yoga - which I find a bit boring. But I now think it's all linked somehow- which gives me a little comfort that there might be a reason. Nail wise I've always had weird nails- they sometimes have layers and are quite thick. at the moment this combined with my "sausage toes" is quite painful and since seeing the Rheumatologist i've been putting my psoriasis skin steroid spray on them which has mildly calmed them down. @Sizzy- by new meds is this DMARDs? Do they make it worse before better? Any experiences on these would be great I don't feel that my physicians explained too much about how the ride on them would be.

Posted Tue 30 Mar 2021 10.26 by Boo

The pain for me began a few years ago in my feet, with swollen sausage toes that were difficult to move in the morning. I now have bad pain in most other places to be honest, my knees, hands, elbows and hips. I also suffer with chest pain, I wonder if anybody else has experienced this? I’ve been told it’s where the cartilage between my rib joints is inflamed. It is a very sharp pain and when it flares it keeps me up all night and makes simple tasks very difficult. I’m only 22 so I do find it scary how quickly things have progressed and I don’t like the idea of being on meds for the rest of my life, I’ve been on methotrexate for two years and have had some steroid injections which did really help for a short while. Sending love to everyone x

Posted Tue 30 Mar 2021 12.31 by Sizzy
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.

I'm on Stelara. I get different issues the first six weeks of each injection and sleep is really difficult. It all then tends to calm down for the next 6 weeks until the next injection x

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