Worried about taking Methotrexate and cold shivers.....

Hi charlotte , I have been using methotrexate for about 15 months and like you was worried about it but decided to give it a go, I was pretty well covered in ps and it controlled my life as in choice of things to wear , holidays ect. Well it changed my life went swimming for the first time with my 11 year old grandson ,wore shorts for the first time in probably 20 years and visited the beach like a normal person totally changed my life and made me a more confident person. There are a couple of negatives the first being having to have a blood test every four weeks to monitor the effects on your body but in 15 months I had no bad results secondly it will make you feel a little nauseous when you take it but I got over this by taking it just before bed and slept through it the next morning I had to take folic acid tablets and after about 30 minutes the feeling had gone in my opinion this is a small price to pay to have one less thing to worry about I hope this has been helpful and if I can answer anymore questions about it please ask good luck , sean

Hi Sean, Wow! That's amazing! I'm so pleased it's been successful for you and I really hope that continues! I worry about everything. I googled it and people said they thought they were crying from using this drug and because I have anxiety and panic attacks it really worried me so much! I'm having problems around my gallbladder at the moment and I'm waiting for tests with that and then I will seriously consider his methotrexate! It keeps getting worse this psoriasis so I know I need to try things to help myself as right now I know I'm not and I'm letting this awful disease win. My rheumatologist told me to not let it beat me! How is your skin feeling? I hope it looks and feels a lot better for you!

Hi Charlotte. I have been lurking around this and other ps forums for quite a few months but your post real struck a chord with me and has prompted me to send my first post..I have had this rubbish disease (sorry) for over 35 years both plaque and currently guttate. However for this last year it's been the worst ever so that prompted me see a demotologist for first time in 20 years. Finally after waiting 4 months I was seen 3 weeks ago and he wanted me to start methotrexate too plus awaiting light treatment (apparently 2 months waiting list 🙄) Also he thinks I may have psa as well as I have joint pain my hands. . I too am really apprehensive about starting this drug as I have read that it can have a list of nasty side effects that some not all people suffer. Now here is the other coincidence with you. I can't start this treatment yet as I am having my gallbladder removed this Thursday and he wants me to wait at least 2 weeks to recover before I go for my first blood test to get the ball rolling. Try to do some more research on this treatment like me coz at the moment I'm still not sure what I will do but my skin is sooo bad right now I need to do something. Have you had an ultrasound for your gallstones?? Angela

Hi Angela it's such an awful disease and I really feel for anyone that has it. Mine is plaque psoriasis and I'm currently scratching all the time and even in my sleep which then wakes me up and I get so much pain in my joints it's awful. I had an ultrasound a year ago but the couldn't see any stones. But I do have a hiatus hernia which they found a couple of years ago by an endoscopy 😔 I have persistent pain under my right rib cage and it sometimes gets so bad I want to go to the hospital! Last summer I was rushed in but as it was a bank holiday they left me and I've only just been referred to an upper GI clinic to maybe get a gallbladder scan?! I really hate this awful pain and it niggles and flares right up! Not sure what it is but I really would love to know so I can get some closure of this and get the right help. I have been told it could maybe be my gallbladder but there's a few organs there so it worries me! I wish you all the best for you're gallbladder removal and I shall be wishing you a speedy recovery! Please keep in touch as I would love to know how your getting on! As on the Methatrexate I really don't know what to do I'm so scared! Take care Charlotte

Hi Charlotte Sorry to hear about your gallbladder problems. It doesn't sound anywhere near as straight forward as mine were. I had 4 gallstone flares, had an ultrasound,found 11mm stone,scheduled surgery for tomorrow. From reading all the different forums the thing I see a lot is that as if we poor people don't have enough to deal with just having this crap affliction,we will also be blighted with other problems as well just to make life even tougher to endure. I had been plodding on through life with my ps not doing anything about it as it was just in certain places and was mostly a problem in the summer as it was unsightly and then I hit 50 last year and BAM I am now covered and other problems are developing too. I find the whole dermatologist route sooooo unacceptable as it is far to slow. I used to see them when I was first diagnosed at 14 and then stopped at about 22 and then again about 10 years ago as had an awful guttate flare after a strep throat infection but after waiting 3 months for the appointment it was almost gone and a complete waste of time. I am now so bad I have had to see one again and know the systemic drug route is my next and only option to try and clear this. Like you this really scares me as I know from reading forums it can be a miracle if you get the right one and few side effects but a nightmare if not and you have to endure a lot and it still might not work. Right now I just wish I could get over my operation quickly get the light treatment the derm mentioned but still haven't heard a thing after 3 weeks and wear short sleeves without feeling like a freak. Sorry for rambling Charlotte. I know you are suffering too right now and aren't probably enjoying the warmer weather like all the normal people 😒 How is your dermatologist? When do you see them again and when do you have to decide about whether to take methotrexate? Have you been referred to a rheumatologist? I will be asking for a referral to one next time I see my dermatologist. When ever that is 🙄

Oh bless you! No please don't be silly your not rambling on, a problem shared is a promblem halved! I really hope your surgery goes well for you tomorrow and I wish you a very speedy recovery! I was diagnosed when I was 27 I'm now 32 and my scalp is so awful! I use capasol and polytar shampoo but to be honest it doesn't do anything! I use raw coconut oil on my scalp and sit in that for a couple of hours which eases the tightness till the next day! It is a vicious cycle and I do feel for you! I was discharged from my dermatologist just over a year ago as he said Methatrexate and a bye basically! I begged my dr to get me seen at the hospital with a rheumatologist but they are not happy with me as I'm so undecided with the methotrexate! I told them it's like I've got this one thing that's worrying why would I want to put something into my body that could make me worse!! It's awful! I really am struggling and so undecided and it's super hard! I wish i could be that person who just takes he pill and get on with the day like no worry. I've now got to wait and see what's going on with my gallbladder before the rheumatologist sorts me out and gives me a lecture over the methotrexate! She was so rude to me last time and said take it or leave it and we're not going to help you 😫I feel like a child that won't take her Medicine! In fact I'm worse than my children! Yet I put myself in their shoes and think (touch wood this doesn't happen to them) if it was them I would make them take it as I want them to get better! I'm such a nightmare!! I hope you manage to sleep a little tonight before your op. Yes definitely ask to get referred to see a rheumatologist.

Oh Charlotte what an appalling way to be treated by your so called experts. I have been reading a lot about certain charters about how doctors are now supposed to have a much more sympathetic attitude to people like us with this awful condition. Only today actually. I can't think of the name right now but I will find it later and put the name on here. As usual though the reality of seeing these doctors can be a complete opposite to what it should be unless you're lucky to get a good one. When I asked mine if he thought I had psoriatic arthritis he said probably 🙄 How helpful NOT!!! As I said one thing at a time. I don't understand why they are so insistent you take methotrexate. There are other systemic drugs you could try I think. Not a 100% sure. Even though I have had ps for 35 years this is still a new route for me too so all I know is what I am reading on forums but perhaps ask them if there is an alternative. Unfortunately I think all of them carry some side effects though but if you read around you do find some people who swear by these drugs and are given a whole new lease of life which is what all us sufferers deserve. When are you going for your next appointment?? I have only had it in my scalp very mild even now despite being covered everywhere else but it's sounds very distressing for you and hope you can find something that will bring you some relief soon. Thank you for your well wishes for tomorrow. I appreciate it. Oh and I understand your concern for your children. I was always the same. I have 19 yr old twin boys and so far thank god they are fine .And I know of no one else in my family that has it (to my knowledge)

Oh that's really awful!! I think a lot more consideration should be taken with people like us with this dreaded condition! I'm so sorry you have been treated like that! I asked if I had psoriatic arthritis with my dermatologist at the time and he said it's likely so go back to your dr and get referred and that is what I did but let me tell you it took a long time to get referred as all they put me down to was anxiety! Because I suffer anxiety and panic they put everything down to that if you suffer with it! Bless your boys, may they continue to not have this disease! I hope they both look after you after tomorrow 💙 Mines all over my scalp and toe nails and finger nails and a few patches on my face that flares up now and again. I'm the only one in my family that has this to yet they say it's genetic?! Well I guess one of us sadly has to start the ball rolling on it 😔 Thank you ever so much for understanding the scared part in the methotrexate it's so hard as my husband is like just take it etc etc but I just can't 🙈 It's so not easy!

I can understand some of the concerns expressed about taking methotrexate but I just wanted to say that having taken it for 6 months now, it has transformed my life. A year ago I could hardly walk and was in so much pain that I thought I would be a wheelchair user for the rest of my life. Now I can walk.have lost a lot of weight and get very little pain most days. My nail psoriasis is clearing and I don't get the brain fog that hampered my thinking and concentration for a long time. Methotrexate has transformed my life. Everyone can see such a massive difference in me. Yes, I still use a walking stick when I go out but that doesn't bother me at least I can walk. Its not much fun being so disabled by psoriatic arthritis that I can cope with taking the pills and a bit of nausea for a day if it means I can get much of my life back. The alternative for me would mean wheelchairs, carers and possibly residential care. I'm only in my mid 60s.The psoriasis and the arthritis attacked me very suddenly four years ago. I would say pluck up courage and try methotrexate as its worth a go. You can always stop it if it doesn't feel right. Good luck !