Hi - so I saw a dermatologist yesterday because my psoriasis has been horrendous in the last 4 months
He said that unfortunately phototherapy treatment is not a good option for me as I be been on steroids so long and so will have photosensitivity and could develop a rash that can be very hard to treat.
He said the psoriasis is so bad now because of the cortisone - it’s a rebound effect - as I’ve gone lower the psoriasis has come out more.
He asked if I had ever considered Methotrexate and I said no - and that I would not.
He said that he is not a fan of drugs either but that perhaps I should consider biologics.
He asked me what I use and when I told him coconut oil for my head he said good - yes he like coconut oil.
He said lotions and creams are not good but gels are and gave me the name of some to use.
Said I must get some sun in the summer but to be careful not to burn.
And I must see him after summer again.
I asked him about LDN (Low Dose Naltrexone) and he said he is not able to comment and so I asked if that’s because of NHS policy and he smiled and said he can’t comment.
I will speak to my Functional doc about biologics and LDN
But I was wondering if anyone has any experience with rebound psoriasis and / or any knowledge of biologics?
Thanks
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Slosh
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Opposite to you I was having light treatment for severe psoriasis then was diagnosed with GCA and the steroids completely cleared my skin. The psoriasis returned 5 months later prior to diagnosis of breast cancer. The steroids have never cleared it the same as in the beginning. I have been on steroids for 7 years this month and the psoriasis is still there albeit not as severe.
You might get more response on a Dermatology site where others might have experienced similar to you. Good luck.
Has it never been suggested that you may not have PMR but psoriatric arthritis? My second rheumatologist was desperate it should be that and not PMR despite me never having shown any signs of psoriasis in my life! A lot of people have said something similar. It responds to a different biologic from PMR/GCA.
When I was started on high doses of pred, I was told by another patient to ask for Double Base Gel. I looked into it and then asked GP. Once I used it I could not be bothered to get another prescription and I still use it today. Use you search engine and check it out on the NHS site you will find it is used for psoriasis. Now I am not saying it will work for you, but worth a try to see if it helps you. Follow the instructions to the letter. I also dropped smelly shampoo and soap and other bath products used Johnson's baby stuff instead.
I have patches of psoriasis,elbows back of neck and back of head on scalp, I used caspol to wash hair and benavote drops and benavote cream on elbows ,since being on pred it has gone off my head and neck and elbows are just red but no dry skin,
Yes mine went away in the higher doses of Pred but back with a vengeance and the worst I’ve ever had it as I’ve gone onto lower dosages. The dermatologist said it ms fairly common to get rebound flares. I will look into caspol - but I react very easily to chemicals so it will be trial and error.
Hi Slosh,I have a similar experience to you, I have had plaque psoriasis since my early twenties with all the usual ups and downs. The only time it really disappeared was when we lived in Brunei, (tropical country) for 3years.
I was diagnosed with PMR in May 2016 and GCA in the September, the psoriasis went into remission because of the effect of the high dose prednisolone. It started to return once I reached about 10mgs.
I contacted my surgery and requested the treatment I had previously been prescribed and started using it but it made it so much worse. My skin became extremely sore, it spread within a couple of days to cover most of my body and I was feeling quite unwell. Lockdown had just started and needless to say GP surgery was not allowing appointments. I did contact them and explained, a locum phoned me back within a couple of hours. He sent me a link so I could chat on my mobile with him and show him pictures. His comment was, " Oh, I didn't realise it was that extensive". He arranged for me to be seen by one of the regular GP's the following day. I was rather anxious as this particular GP had previously refused my request in 2017 for a change to gastro resistant pred not once but three times. I ended up in A&E with severe gastritis and although he then agreed the damage was done and I was back in A&E earlier this year with oesophageal spasm. I went into the consultation with a big smile, "How good to see you face to face" but, "oooh errr", was what I was thinking inside. I explained that I thought I was now allergic to something in the calcipotrol, "No", said he, "It is just a vitamin D derivative you won't be allergic to that". So I showed him...
Anyway to cut short he immediately referred me to dermatology but sadly being lockdown the appointment was by phone and I had to send in pictures. My psoriasis is now controlled by Enstillar which is a foam and surprisingly it has changed to guttate form.
I use 'Zeroderm' as a soap substitute and 'Liquid Paraffin 50% in White Soft Paraffin' as a daily total moisturiser. It is a bit greasy so have to wash pyjamas every couple of days and bed sheets etc much more often.
It does appear to be under reasonable control at the moment but like you the rebound effect on the condition of lower steroid dose was completely alarming.
In the past I have thought about psoriatic arthritis, but no I am just collecting auto immune conditions.
I don't have any knowledge of biologics to treat it so will be very interested in any replies. Unfortunately both my husband and son have psoriatic arthritis and have used methotrexate. It has given great relief to them, my son had to come off it briefly when he and his wife were trying for a baby 🚼 and will do so again for the next one. My husband was able to come off it sometime ago and is in remission. He also had and still does have skin psoriasis, my son does not.
Enormous good wishes to you over this, it is a frightfully difficult condition to manage and so unpredictable.
I too joined the HealthUnlocked psoriasis group and look on there regularly but they don't appear to have the number of members yet and of course more importantly they don't have a PMR PRO, DL, Heron or a Snazzy for us to turn to.
Yes we are so fortunate to have these PMR experts - I would have been so lost without this group.
I had a bad reaction to Enstilar so had to stop that. I have multiple chemical sensitivities.
I’m so sorry about your doctor - he sounds so arrogant and just awful! Why on earth would he refuse you gastro Resistant Pred!?? Bit late when the damage is already done!
What exactly is an oesophageal spasm?
I will look into zeroderm too - thanks.
The dermatologist said to try Gels like Doublebase - and so I will give that a go first.
I now have both plaque and guttate and also over much of my body - all of my torso.
Sometimes the wilful ignorance of some doctors astounds me! He doesn't REALLY think it is pure vit D does he?
"Dovonex® ointment contains calcipotriene 50 µg/g in an ointment base of dibasic sodium phosphate, edetate disodium, mineral oil, petrolatum, propylene glycol, tocopherol, steareth-2 and water"
"At the present time, dermatologists estimate that PG [propylene glycol] allergy ranges from 0.8% to 3.5%, but it is much more likely to cause allergy when it's in aqueous solution. In that case, allergy rates range from 10% to 30%."
And that is the substance that is causing the concerns with allergies for the Covid vaccines ...
There was certainly a LOT of sun, boy was it hot. We had air conditioning in our home as did everyone and all the shops and cars were air conditioned. We did socialise outside but practically always on the edge of some jungle covering and we were slathered in sun cream. Looking back we probably didn't get much sun on our bodies at all. Some of the expats were lucky enough to have the sort of skin that doesn't burn and were able to enjoy being exposed a little more. However my greatest joy was being able to swim in the Indian Ocean we were able to access it through about 40 metres of jungle just at the end of our garden. Our son was born out there and I have wonderful memories of him crawling in the shallows. Although we limited our time outdoors because of the heat I expect my vitamin D absorption was probably still quite a bit more than in UK as we were out every day even for a short time.Lovely memories
Hi, my husband is on a biologic for his psoriasis, he has an injection every 12 weeks and it really does keep it at bay for the majority of the time. He has been on many different medications for psoriasis to try and keep him out of hospital and the biologic has been the best especially as it has really minimal side effects.
Hope your condition improves and you remain clear for a long time. Unfortunately, this condition has on off history and is a frustrating one. How do l know? My father has it from last 50 years, he is 101 now and l have it too for past 15 years, 61 now!
We have treated my father with all kinds you have heard here and homeopathy too. He has complete remission for years, up to 5 years of spotless history and it comes back with vigour, especially in Winter, which triggers increased skin turnover. At 70 he spontaneously developed megaloblastic anemia, so oral steroids, aggressive therapies are not on. What seems to work are topical paraffin, clobestrol / other steroids and salicylic acid, photo therapy in winter. In summer it recedes and he is mostly trouble free. Last winter was bad, lots of scaling, had 70 % of his body with inflammatory lesions and we had to use heavy topical application to get it under control, dermatologist has strictly prohibited all oral medications for dear of dropping haemoglobin. I feel so helpless.
Me: On this road for 15 years, fortunately only on my right calf now, on topical salicylic acid, which works best for me. It was on all over my both legs but complete remission with topical steroids for 5+ years now. In winter, l get flare ups on my fingers, but on moisturisers it goes away. My scalp condition disappeared after l removed all hair on my head and keep it so for last 10 years. I have hyperthyroidism, diabetes mellitus (under control fully with medication and exercise) and lrritable bowl syndrome. I know my autoimmune problem will probably overtake all efforts, but will fight for it. My lBS disappeared, Diabetes came under control, under 6.5 HbA1C for 1 year and strangely psoriasis too... After l started jogging average of 4-5 Kms daily, 5 days a week! It's an effort, but the results worth fighting for.
It's relevant to say, l was in Pharmaceutical industry for last 35 years, was teaching pharmacology + anatomy & physiology there in Marketing drugs. I emphatically say:
.... Some doctors are unadulterated asses, they don't read, update and stay in a high pedestal! Total idiots! I have met many in my life. Always take a second opinion for any chronic treatment or risky surgery and read up on it!
..... Autoimmune diseases are still an enigma, nature's way of apoptosis, if you will, forcing us to observe own systems and body more. There SURE are triggers which increases disorders, you need to carefully isolate them. Mind and a will to fight diseases or disorders have a lot to do with well being. My father is a classical example with positivity at 101 and my Mother on law, an opposite one, with negativity at 85, with CKD (chronic kidney disease stage 3) & RA ( Rheumatoid Arthritis) living hell by brooding on it.
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and keep it so for last 10 years. I have hyperthyroidism, diabetes mellitus (under control fully with medication and exercise) and lrritable bowl syndrome. I know my autoimmune problem will probably overtake all efforts, but will fight for it. My lBS disappeared, Diabetes came under control, under 6.5 HbA1C for 1 year and strangely psoriasis too... After l started jogging average of 4-5 Kms daily, 5 days a week! It's an effort, but the results worth fighting for.
Covered in confusion!
Reduction of Prednisolone Dosage
REFFERAL TO RHEUMATOLOGIST
Biopsy Negative for GCA
CRP 0.80 (reference value 0-0.5mg/dL)
