Update - Telephone Consultation with my Dermatologist Today :( Enstilar Foam?

if your dermatologist has offered you Enstilar foam TAKE IT , it eased mine up so much i only stopped using it as my GP said it was too expensive !!!!! ( you could not make it up ) They will not commit themselves to commenting on Homeopathy as to them its just a fad treatment , I have tried tried a couple along with acupuncture and chinese herbs and teas but none ever worked , Try the instilar .DO NOT USE THE ACTITRETIN its awful toomany side effects to which i am now counting the cost .Good luck

@scarletsmummy Thank you so much - well if my GP comes out with that one anytime soon and it works for me he will have a battle on his hands!? Lol Can you not try again for it? I will try the Enstilar first and then after that I am going to try Homeopathy - nothing ventured nothing gained - I feel I must at least try :( It's just such an awful debilitating illness for so many people children too - how can the powers that be let children suffer never mind adults!! In this day and age? Really??? Grim grim grim. Are you in the UK? Sharon

Can't do any harm to give enstillar a go. If it doesn't help then at least you have tried it and can move onto the next med. I tried enstillar to replace dovobet but after a few weeks continued with dovobet. Enstillar was quite expensive at about £80 a tin ref BNF. I know we have discussed the downsides of acitretin previously. Why don't you want to consider methotrexate? It still has side effects but not like acitretin. Succesful for me but everyone reacts differently to drugs of course. The injectable Mtx is supposed to have less side effects than equivalent dose of tablets. Good luck

@Steview Thanks. Methotrexate: All of these reasons. This drug has black box warnings. These are the most serious warnings from the Food and Drug Administration (FDA). Black box warnings alert doctors and patients about drug effects that may be dangerous. Liver problems warning: Methotrexate can cause end-stage liver disease (fibrosis and cirrhosis). Your risk increases the longer you take this drug. Lung problems warning: Methotrexate can cause lung lesions (sores). This effect can occur at any time during your treatment and with any dosage. Stopping treatment may not cause the lesion to go away. Call your doctor right away if you have trouble breathing, shortness of breath, chest pain, or a dry cough while taking this drug. Lymphoma warning: Methotrexate raises your risk of malignant lymphoma (a cancer of the immune system). This risk may or may not go away when you stop taking the drug. Skin reactions warning: Methotrexate can cause skin reactions that could be fatal (cause death). They may or may not go away when you stop taking the drug. If you have certain symptoms while taking this drug, call your doctor or 911 right away. These symptoms include red, swollen, blistered, or peeling skin, rash, fever, red or irritated eyes, or sores in your mouth, throat, nose, or eyes. Infections warning: Methotrexate can make your body less able to fight infection. People taking this drug are at increased risk of serious infections that could be life-threatening. People with an active infection should not start using methotrexate until the infection is treated. Harmful buildup warning: Certain health problems can make your body clear this drug more slowly. This can cause the drug to build up in your body and raise your risk of side effects. If this occurs, your doctor may decrease your dose or stop your treatment. Before starting this drug, tell your doctor if you have kidney problems, ascites (fluid in your abdomen), or pleural effusion (fluid around your lungs). Tumor lysis syndrome warning: If you have a rapidly growing tumor and take methotrexate, you’re at increased risk of tumor lysis syndrome. This condition can be fatal (cause death). Call your doctor right away if you have any symptoms of this syndrome. Symptoms include trouble passing urine, muscle weakness or cramps, upset stomach or no appetite, vomiting, loose stools, or feeling sluggish. They also include passing out, or having a fast heartbeat or a heartbeat that doesn’t feel normal. Warning about treatments that increase side effects: Some medications and treatments can increase the side effects of methotrexate. These include radiation therapy, which raises your risk of bone or muscle damage. These also include use of nonsteroidal anti-inflammatory drugs (NSAIDs). These medications raise your risk of problems with your stomach, bowel, or bone marrow. These problems can be fatal (cause death). Examples of NSAIDs include ibuprofen and naproxen. Pregnancy warning: Methotrexate can seriously harm or end a pregnancy. If you have psoriasis or rheumatoid arthritis and are pregnant, don’t use methotrexate at all. If you get pregnant while taking this drug, call your doctor right away. This drug can also affect sperm. Both men and women should use effective birth control during treatment. Gastrointestinal tract warning: Methotrexate can cause severe diarrhea. It can also cause ulcerative stomatitis, an infectious disease of the mouth resulting in swollen, spongy gums, sores, and loose teeth. If these effects occur, your doctor may interrupt your treatment with this drug. I would rather NOT to be honest :( Am I wrong? And my Mum died from Liver Cancer - scared to compromise my liver! :( The PPP seems like the lesser of the evils! :( Sharon

Wow, If you read the known side effects of every medication we probably wouldn't take it. I can understand your reasons. In my case as most other options failed, I went through the acitretin, cyclosporine, mtx and now biologics. I know if I hadn't then my quality of life would be zero. Probably had to give up work and maybe not had the confidence to meet someone, marry and have children From late teens in the spaces of 18 months I spent a month on 3 occasions in hospital wrapped up like the singing detective. If I hadn't gone down the tablet/biologic route, hospital inpatient treatment would definitely have been more frequent for me. Good luck with your treatment.

Aww Sorry hope I haven't offended you? I am a medication sceptic but I understand your reasons too - so pleased things got better for you. Maybe mine is manageable - yours was a lot worse :( Are you ok now? Hope so. Thanks for your input. I have a way to go yet :( Sharon

Thanks Sharon, no you didn't offend me. We all have to manage our condition in certain ways and a lot of the time if we are desperate we follow the docs recommendations. As stated above the meds I have taken meant I could lead a pretty normal life, too an extent. It is only the past ten years on Mtx that I saw a real improvement compared to acitretin. In between those I had two bouts of light therepy, first worked well second not so much and then had a major flare up. Fast forward ten good years of Mtx, the nausea was starting to get to me. As the cost of Biologics have come down in that time I was offered Stelara and for the last six months all is good. Of course all these meds come with side effects and have to have blood monitoring regularly. All being well I have been informed that I should remain on Biologics for the rest of my life. I am happy with that if clearence remains good and my health is in good shape. These modern meds are a far cry from the in patient treatment of 30 odd years ago. starting the day with a tar bath, then light treatent followed by covering the affected area in dithranol. Leave it for a few hours then clean it all off. Messy stuff and anything you touched was stained forever. My comment about the singing detective in jest but one was literally covered in a type of bandage from head to toe. You have to do what you think is right for you. If it is just your feet affected then acitretin or Mtx may be a drastic move.

Enstillar works well but it did have side effects for me = A red rash in the genital area that does go slowly once I stopped using Enstillar . The rash made my skin red raw in that area also i had a prolonged sore throat, like a lump in my throat every time I swallowed . Both these side effects do go once i stopped using Enstillar. Like all treatments for P i have found P starts coming back as soon as the treatment is stopped = slowly but surely it returns. Ive been chasing P around my body for 30 years so these days I’m resigned to having it. If it comes on my face i use betnovate and yes I’m fully aware betnovate supposedly thins the skin. I’ve never been tempted to take the stronger medications after reading all the side effects and luckily my p is painless and rarely itches. I’m not going to risk my internal organs for something that for me is mostly a cosmetic issue. I probably don’t have it that bad but i do have dots of it everywhere the size of a pound coin. I think acceptance is a key issue with P

@Steview Aww what a tough time of it you have had over the years - I totally understand you trying everything. Although I have had it for 22years I have always manage it quite well it has just been the last 6 months or so that it has got rampant :( I gave up smoking after 45 years back in December and I do wonder if this triggered something even though they do say that it 'can' be caused by smoking!! But they tend to blame smoking on EVERYTHING!! I asked the Dermo if that could be the cause of it's acceleration and he said he didn't know as there was no test to compare it to as there was only me! They believe in the science of meds don't they? But...........in your case it really was the right path to go down. Singing Detective I remember so well - I know someone who's child had to have this treatment regularly :( I just think that in this day and age people should not have to suffer so - but again I suppose they have the meds now and it is a long process of emimination - sadly. I hope you stay well. :) I feel a bit of a wimp as mine is nowhere near as bad as yours and a LOT of others too :( @LondonWest Thank you for your input - I will suck it and see but will watch out for side effects :( I totally agree about it being an acceptance issue with me - I just have to stop whinging and 'manage' it as best as I can! Awful illness!! Grrrr Take care and thanks again.

Sharon, thank you for your kind words, I do hope you find the relief you are looking for. Good on you for stopping smoking, I have never heard of that as a possible trigger. It is funny (not in a laughing way). The times I spent in hospital as a teenager, I look back now what a primative way of treating the condition. Being a teaching hospital the docs would come round with their students and look at me, ask questions and take pictures. I wonder after all these years if my pictures ever made it into the text books lol :) I suppose over time we learn to adapt and accept life with our condition. Good luck.

@Steview Thanks :) All the best luck to you too. x