My story so far on Psoriasis nail treatment and PA
Posted Tue 18 Sep 2018 by mlloydy (edited Wed 19 Sep 2018 00.10 by mlloydy)
Hi guys, first time posting, 32yo male 👋🏻 This is my story so far on psoriasis and psoriatic arthritic, sorry if I ramble but I thought it could help some people. I’ve had mild cases of psoriasis for over 10 or 12 years, mainly on the scalp. I’ve tried many creams and other treatments over the years and have always had the best results from Lotriderm cream, however I was recently recommended to try Betamethasome liquid solution by a nurse at my doctors for my scalp. I found it gave me bad dandruff after the first use so I stopped using it and it’s been in the cupboard ever since.
Anyway, I’ve also suffered from what I thought was fungal nail for years, I’ve tried every treatment including Terbinifine medication from the doctors (which isn’t great for the liver) and even expensive private light treatment (£500 I’ll never see back), nothing worked.
I was recently diagnosed with Psoriatic Arthristis and suddenly all my pains and swellings over the years now made sense. So I started to realise that my nail issues are likely caused by psoriasis, so I tried steroid creams and wrapped plasters round the nail.. with no improvement. So back to the bethamethasome that I still had in the cupboard. I poured some over the affected nails every night and wiped off the surrounding skin, waited for it to dry then went to bed. The spread of the nail deterioration has stopped, my nail has been growing out healthy for the last 6-8 weeks and I’ve been trimming down the affected areas and scraping off any dead nail. I now have about 2mm of affected nail which doesn’t seem to be spreading.
Before starting the treatment half the nail on the big toe was affected and had spread down to the base at the sides. I had almost given up and even considered having the affected nails removed. It seems because the bethamethasome is strong and in liquid form, it can penetrate the nail and slow the spread. Fingers crossed I can get rid completely for the first time in 12 years!
I’ve also had repeated swollen knuckles and pains in my foot for years which I’ve had steroid injections into and it eventually stops the swelling altogether, only for it to crop up in another location. I’ve also had two knee operations due to swelling which was diagnosed as a cyst in the joint, however, I had also been diagnosed with a ganglion cyst in my hand which now turned out to be fixed from a cortisone injection, it was just swelling of the tendon. Now I’m thinking that the two painful operations to my knee were for no reason, but I trust the doctors knew what they were doing 🤨
I’ve always been into the gym and didn’t know why I was always in such pain and just thought maybe it’s gym injuries or whatever. last month I had a general injection in my butt of DepoMedrone, I thought this was a miracle cure... which lasted about 7 days, I was back at the gym feeling 95 % like a new man, then the symptoms started to creep back, I have pain in both shoulders, my right thumb and wrist, my left middle finger, my hips, groin, both knees, right foot, and a sausage toe 🙄 x-rays don’t show much if any deterioration of any joints (except my knee which the surgeon was digging around in, twice!) so I’m hoping after some medication I could one-day be back to normal .
Reading other people’s cases I actually feel lucky that my arthristis isn’t as bad yet, I still attend the gym a few days per week, training can be painful but I feel it helps a little with mobility, keeping active and stretching. I have shoulder and groin pain mainly so any pushing exercises and sit-ups are a bit too painful (at least without naproxen).
I start treatment at the end of the month and my rheumatologist has suggested Sulphasalazine. I’ve researched and it seems as good as any DMARD treatment to try without being too strong. I hear it doesn’t agree with some people but I’ve not had many adverse reactions to many medications so fingers crossed :-/ I even read someone had depression from it, some scary side effects, including low sperm count which is temporary I hope. If anyone can suggest what worked best for them that would be great. I’m not a fan of all the blood tests either but needs must, my last blood test bruised my whole forearm :(
One thing I do worry about is the immune suppressant part of the medication (it’s main function) in that I worry I would be more susceptible to illness or infections.
Thanks for reading, if you got this far :)
Wish me luck and if anyone has any questions feel free to comment.
Posted Wed 19 Sep 2018 01.45 by mlloydy
The strange thing with the nail psoriasis I only ever had it on two nails on one foot, and I was always wondering why it never spread, so I’m hoping once this clears it doesn’t come back but I’ll keep a close eye on it. I’ve tried lots of diet modifications over the years. I’m pescatarian so don’t fancy bone much but I’ll look into it, I’m sure they use gelatine in some sweets too. I’ve been tested for gluten intolerance but awaiting the results. I also don’t drink milk but I must admit I still eat cheese 😬 I noticed after ditching milk that some achne on my back cleared up!
Posted Fri 5 Oct 2018 16.12 by WorkingMumOf3
Sulfasalazine did nothing for my PsA. In fact, it is worse than when I started this drug. And it significantly affected my mood and motivation. I was diagnosed 2 yrs ago with PsA at age 44, but been symptomatic for 7 yrs. But I’ve had nail psoriasis since 14 years old. Every finger nail is affected and very painful. I have a loss of dexterity in my fingertips as a result. I was prescribed Methotrexate for the PsA but came of it at week 8 due to hair loss. Limited nausea and fatigue for first day after taking it. Switched to Sulfasalazine 7 months ago and put on 2000mg per day. No noticeable side effects for 4 months other than weight gain. But suddenly at 5 months I developed plantar fasciitis, severe fatigue, apathy, very low mood and stiffness throughout my whole body.. I felt and moved like a woman twice my age. My CRP levels jumped from <5 to 13. And my joint pain in my fingers, feet, lower back and hip got progressively worse, despite taking co-codamol and diclofenac for regular 10- day spurts when things really flare. So I finally gave up on sulfasalazine a week ago. The next day, I felt a different person - it was that noticeable. And I have felt better with each passing day. Fatigue has gone, mood lifted and the stiffness lessened. I’ve lost 2lbs in a week without dieting. People are even telling me I look better! Whilst I still have the joint pain, stiffness and sore feet, I am significantly better in myself since coming off this drug. So I can’t recommend it sorry. I’ve been prescribed Otezla now and start tomorrow.
Posted Fri 5 Oct 2018 17.43 by mlloydy
It’s difficult with meds since they tend to affect people differently, I’m only a week in with Sulphasalazine so can’t comment yet 😕 This was the only one I could really see during my research that seemed worth trying before progressing to something like biological drugs but they seem to have worse possible side effects. I’ll have to see how it goes, I’m hoping some people must have positive results or they would prescribe it 🤔
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