Hello everyone, I have just joined this group, it is really helpful reading everyone’s stories. I no longer feel like I’m the only one suffering from this. I was really upset when diagnosed as I’m only 32, but had this since I was 30. I work abroad and haven’t been to see the doctor here about my situation and meds. It’s not easy finding someone that speaks English. I have found taking naproxen every day helps me. I have taken this every day for about a year and a half. I have also just started taking a drug to protect the stomach as well. So far it seems to work but I have no idea what my stomach is like!
My doctor in the UK advised me to take methotrexate but that would mean regular blood tests for the first 3 months. As I wasn’t living in the UK this was impossible. I have also heard of the bad side effects and heard that it might affect your fertility as well, is this true? I am sure I want to have a baby soon so got quite worried and didn’t start taking it.
I need advice on what to do… Is taking naproxen a really bad idea! Maybe I should get checked out again at the docs???
Hi there princesa, welcome. Non steroidal anti-inflammatories, which is what Naproxen is, are usually the first line treatment and there is no doubt that they help control some of the symptoms of PsA. Unfortunately this can be a nasty disease and still be causing damage and so we talk here about treatments that control symptoms and those that control the disease which is ultimately what doctors are aiming for. Some of these treatments are unsafe whilst you are trying to conceive and whilst pregnant. My thoughts are that you need to have a meeting with your rheumatologist and agree a PsA treatment plan around having a family. There are some excellent articles in our Newbies Guide which might help you understand this better. There are several members here who are in or have been through this situation so I'm sure you'll hear from them once they catch up with you post.
Jules is so right about only getting symptom control vs disease control. Daily struggles and pain are usually easier to get help for but long term damage prevention should be your goal. I consider myself a newbie and had same issue with trauma to my ribs (got that from your member page) that just never got better, long story short PSA took over. I had a lot of problems with MTX side effect wise but my liver was OK throughout. It is a severe drug that effect everyone differently so the feasts are important. The funny part was when I was on it it worked!! I wish I could have personally tolerated it as well as many do but no way. I can honesty say other than still having heavy fatigue it worked as good or better than my new savior Enbrel. If you can get script for a bio it mau only require one initial test and they have fewer regulat testing involved. Hope this helps some but you need to consider trying to locate a doctor that can help where you are. Good luck!
Princesa, I’m glad that, at the very least, you’ve gained the feeling that you are not alone in this. You aren’t. We “get it”. All of it – the physical, the psychological and the practical. The board is rather quiet at the moment, as it often is during the summer months. But post anyway, and someone will answer!
Starting with the Newbies’ Guide is a great idea: there are more “beginner” articles at the end, so go to t he last page first. We must re-order those one day! There’s an article about symptom control vs disease control which may be of interest to you right now. As far as pregnancy goes, here’s one which you may want to have a look at: http://discussion.livingwithpsoriaticarthritis.org/forum/topics/pregnancy-breastfeeding-and-psa
You have posted this discussion – correctly – in Medications. But I am goign to move it to general discussion, where it may get a bit more attention. Hope that’s OK with you.
Something else that you may want to do is introduce yourself in the NEW MEMBERS’ CHECK IN under the DISSCUSSIONS tab. It would be nice for you to meet some more PsA friends.
Different people will have different reactions to different medications. That said, there are some medications that are absolutely incompatible with pregnancy. Methotrexate and leflunomide fall into that category. They don't impact your fertility but are quite dangerous to the fetus.
Welcome Princea! No, you are not alone. Fortunately for all of us we have people from the UK as well as the USA. I have faith that members in this group will help you learn to use the health system in your home country.
Immunity?
p.s. Each country has different ways about allowing certain meds first, second and so on... I can not comment on what the UK allows.
Hi Princesa! I can give a little insight with the pregnancy part. Methotrexate will not cause issues with fertility. I was on it and had no issues getting pregnant, however, you need to be off of it for at least 3 months(I did 6…I’m a worrier) before trying to conceive as it causes major issues for the baby. Now I’m lucky and I have gone into remission with both pregnancies (this may not happen for you) but my rheumy put me on Humira after I had a flare at about 8 weeks postpartum and it was safe for me to continue nursing…which was awesome! When we began discussing baby number 2, he said that Humira was ok early on but would need to be stopped at around 6-8 weeks pregnant. I know there are medications that can be taken during pregnancy but you would need to talk to your doctor about those.
My husband and I had already started to try to conceive when I first started getting symptoms. I had done a six-month detox and was off all medications. When I realized how severe my symptoms were we had to put those plans on hold. When I first met my rheumatologist about six weeks ago I stressed the fact that I wanted to start a family soon. She told me my options were sulfasalazine and NSAIDs (the lower risk lower potency end of the drug spectrum) or Biologics (The higher risk higher potency end). Due to the severity of my symptoms she thought that the lower potency drugs wouldn’t work for me. I had seen that for myself with several rounds of prednisone and a variety of NSAIDs. Nonetheless I wanted to try the sulfasalazine as a less risky option before jumping into Biologics. Even then my doctor says the Biologics are pregnancy friendly they’re so new that I worry about the risk. Also a friend of mine has ankylosing spondylosis. The same rheumatologist as mine put her on Humira right away. She developed MS. After getting off the Humira they tried sulfasalazine and she found it worked for her. Her story was a driving factor in my drug choices. Now that I’ve done more research I’ve seen that most people have to go through a number of drugs over the years. I’m glad I started with the sulfasalazine chances are even if it works it won’t works for ever but hopefully I can save the Biologics for after pregnancy.