: I am a 51 year old wife, mother, grandmother of two diagnosed with psoriasis as a teenager but recently with PsA in 2016. I’m having a very difficult time as we haven’t found a treatment regiment yet due to living overseas, poor doctors, and other intrusive medical issues. I was diagnosed at age 50, in the middle of menopause, the same time my youngest son was diagnosed on the autism spectrum, the same time my husband was being deployed to Afghanistan and I was working at a very difficult job. I felt like the world was caving in on me. The rheumatologist was four hours away in a different country and our international base clinic didn’t have the capacity to treat me (that or I could go on the economy to a rheumy who didn’t speak English). One struggle after another I’ve learned to try to accept it, but not yet finding the magic meds is making it very difficult. The good news after living overseas in Belgium for five years we have returned to the states and living in Hawaii! Now the problem is finding a competent doctor who can get me the right treatment. I’m still having lots of pain, fatigue is off the charts, frustration and have days when I cry to sleep, but hoping a new warmer climate, and this support group, can help.
Many people are not familiar with PsA and immediately respond with, “Oh yeah, I have arthritis, too” so I don’t often share my issues with others, and that doesn’t bode well either. Realising I need more support is a great step forward. I began the journey on a different support group and it was a terrible experience— very clicky, and for someone who has never done a support group it left a bad taste in my mouth. Thankfully I’ve foUnd this group and by reading the thoughtful responses I hope to be as helpful to you as you have been to the awesome people who share this resource.
So my journey continues. Rheumy just started me on Enbrel so we shall see! Thanks for reading and I look forward to doing some sharing and caring for my PSA family
What a difficult time you’ve had. I hope you and your family have a much easier ride from here on. There’s a fair chance that Enbrel could help with that!
High DrGatorGirl, and welcome! That last paragraph of yours gives me hope that you will be feeling better soon. Enbrel has done a world of good for me and I think it has a pretty good track record or it wouldn’t have stayed on the market for so long. So sorry to hear about your bad experience with a different support group. I had joined another when I joined LWPSA, and I thought the people were snotty and not very well-informed about the disease. I only logged on there a couple of times and then just stuck with this group…I don’t think there’s any “clickiness” here–we have some really knowledgeable people and excellent writers–along with some great comedians who inject good humor to bring up everyone’s spirits every so often.
Good luck on Enbrel!
Thanks Grandma J! Well, 9 weeks of Enbrel is NOT doing the trick. Dr says we will switch it again next visit in two weeks. I’m also looking for a new rheumatologist-- this guy has horrible bedside manners and admits he is not well versed with PsA! So almost two years and no working solution. Frustrating. But thanks for your reply and I look forward to sharing with you!
Not so great about Enbrel though. Is the Dr who prescribed Enbrel the same rheumy you’re dumping? If so, he would seem to be doing all the right things at the moment despite his lack of people skills and PsA experience. I’m wondering whether 9 weeks is long enough to know whether Enbrel is for you or not. However I suppose if it has achieved approximately nothing then it might well be time to try something else.
The bottom line of my definition of a good rheumy for PsA is one who will try biologics ASAP unless the disease is very un-bothersome. And will then try another biologic if the first doesn’t cut it. You can see where I’m coming from! Perhaps there are more reasons for you being less than impressed though.
Two years is a long time to be waiting for some progress. Unfortunately it is not unusual as you probably know all too well. Please keep us in the loop in 2018, if you wish, there are so many here who have been through similar things and many who have had that breakthrough that you must be longing for.
Hi there @GatorGirl… am so sorry to hear that the Enbrel is not doing the trick for you!!! It’s soo frustrating waiting to see if a new med will work, I understand the roller coaster of hope and disappointment all too well, it seems to be fairly common with PsA unfortunately… Hang in there… there are still plenty of options out there to try, and try to keep faith that there is one that will work for you… I will be keeping my fingers crossed for you that the right one for you is found ASAP.
As far as your rheumy… horrible bedside manner can be difficult to deal with at any time, but even more so when you are feeling miserable… the fact that he has been honest with you about not being well versed with PsA could actually work in your favor though… He may actually be more open to listening to you if you can go to him with ideas for treatments etc… as long as you can show good reason for those ideas… might be worth a try?
Reading back over your initial post all I can say is wow, such a lot to deal with!! Life can throw us some real curlies at times and it really sucks when they all pile up at the same time.
Here’s to finding a good treatment for you in the very near future, that would really make 2018 a special year for you!! All the best for the year ahead!!
Hi @Sybil Sybil- thank you for responding This rheumy has been in business for over 30 years. I hoped he would know more than I. I can deal with bad bedside manners – have no problem addressing it if it gets out of hand, but he doesn’t ask me questions or really Interact with me. It’s strange. He comes in (always an hour to two hours behind schedule) and looks at my hands, always says the same thing (I don’t psoriasis on you) until I remind him it’s in my scalp, doesn’t ask me how I feel or any interaction so I tell him how I feel, he says Enbrel plateaus in 10 weeks so he will probably change it since I’m not seeing much, if any, improvement. The first two weeks I actually felt less stiff! I had great hopes! But then it went back to the pain in my feet, hands, neck, etc. This last shot I even had a reaction at the injection site which I’ve never had before! He argued with the Tb doctor (Tb doc told him the antibiotics I have to take for Tb will interfere with the Enbrel. His response to her? “Bullsh!t!”. So I had to go two months of no medical treatment for PsA until Tb meds kicked in. Oh the stories go on… I just need a team who will communicate well with each other. I’m on so many different meds I worry about some canceling out the other.
Anyways, I’m happy there are other meds to try and haven’t given up hope. Just feel I’ve got too much living to do to be hindered by feeling so terribly yucky. I know I’m not alone and I know there are much worse health issues others face in a daily basis. I am thankful for life, family and opportunities–just want to bring this disease(s) to a manageable level so I can get busy!
Hope you are doing well and have a great new year!
Thanks @janson :). I totally agree with your thought that having a newbie rheumy that he may be willing to try new things. He has been in the business for over 30 years. When I’ve suggested new things or asked questions I get a grunt, an open-mouthed yawn, or a flat out “no.” Haha! I just know I need to change doctors. I was just curious how long it took others to find the right “fix.”. I know people can “grow out of” a med and need to change, but curious how many were tried before they found something that worked well enough to make a real difference. I guess chance plays a part, too. Some get lucky on the first med or two. Maybe 2018 will be my year?
Ah, yes… I see your issue with a rheumy that although he says doesn’t know too much about PsA, he also seems disinterested… it was just a thought really… sad he isn’t a bit more interested (disgusting really, but there’s not much you can do to change that in him I guess)
If changing rheumies is do-able and that’s what you feel you need to do, then it probably is your best bet… we need someone with whom we can have two way communication on the journey we face!!
As for how long it takes to find the right “fix”, I wish I knew… I’m still looking too… My initial diagnosis was from my GP, about April/May last year… it took till March this year (after about 6 months on 10mg of Mtx) to even get to see a rheumatologist… so we are still not through the trial of 2 DMARDS yet… just added Leflunomide to the mix mid Dec. I think if this doesn’t work I might get a look at my first biologic (not sure of that though as yet)… that’s the rules here, like most places… fail 2 DMARDS before you can try a biologic. So I think I’ve got to give the Leflunomide about 3 months to give it a fair trial, unless for some reason it proves I don’t tolerate it.
From what I read it is not uncommon to go through 2 years or more of trialing different things before “hitting on” the “right one”… a frustrating process to say the least… but I keep hoping with every new change/addition to meds we might get lucky and try to hang on to the faith that something will work… my main objective at this point is to prevent any damage to joints… keeping symptoms under control has to be secondary to that… but look forward to the day when I can say “that seems to be working well” with a smile a mile wide It can and does happen.
My “real” rheumy is well experienced in the field (although I’m not sure of just how much experience he has with PsA specifically) but is incredibly busy, so now I am seeing his registrar… I was a little dubious about taking that route initially… but the first appointment with her (the registrar) has removed any reservations I had… she is absolutely excellent… keen to learn, and therefore listens… has not brushed anything off, and is keen to push forward with meds… if she is uncertain of anything she can run it past the rheumy and is not afraid to state her case to him either I’m sure her and I are going to get along famously!! So now I feel I can look forward to a more positive outcome (something I’d have to admit I was starting to doubt, just a little).
Every positive story I read here certainly helps to boost the optimism too
Do keep us up to date!! I’m sure I’m not the only one who will be taking an interest in where things go from here for you.
High DrGatorGirl, and welcome! That last paragraph of yours gives me hope that you will be feeling better soon. Enbrel has done a world of good for me and I think it has a pretty good track record or it wouldn’t have stayed on the market for so long. So sorry to hear about your bad experience with a different support group. I had joined another when I joined LWPSA, and I thought the people were snotty and not very well-informed about the disease. I only logged on there a couple of times and then just stuck with this group…I don’t think there’s any “clickiness” here–we have some really knowledgeable people and excellent writers–along with some great comedians who inject good humor to bring up everyone’s spirits every so often.
Dr says we will switch it again next visit in two weeks. I’m also looking for a new rheumatologist-- this guy has horrible bedside manners and admits he is not well versed with PsA! So almost two years and no working solution. Frustrating. But thanks for your reply and I look forward to sharing with you!
and try to hang on to the faith that something will work… my main objective at this point is to prevent any damage to joints… keeping symptoms under control has to be secondary to that… but look forward to the day when I can say “that seems to be working well” with a smile a mile wide 
It can and does happen.
I’m sure her and I are going to get along famously!! So now I feel I can look forward to a more positive outcome (something I’d have to admit I was starting to doubt, just a little).