Newly dx'd and full of questions

[singlemumof2PA]

Hi everyone. I would like to start by saying thank you. I have spent several days viewing all the posts and have already learned so much. Its nice to see there are others feeling the exact way I am right now. Abit about me, two weeks ago I finally got into the Rhemy's after suffering for about a month with majors flareups affecting almost every joint on my left side, as well as my back, both shoulders, neck and knees. All the blood work had been done by my regular GP including xrays of my hands and feet. He dx'd me in 2 minutes flat given the facts plus I have had mild P for a few years now, and 3 nails that have lifted. He immediately gave me two shots of coritsone, one in my left big toe joint, and one in my left thumb joint. Weened me off the prednisone, and made me give myself an injection of Methrotrexate (with his help), and wrote me a precription to start Celebrex once I was done the prednisone. I have noticed a major difference so far, although I am still plagued with fatigue, my limp has improved, my left hand feels better although I still struggle with certain grips (like squeezing the toothpaste). He automatically signed me up for a self management course through the arthritis society, which I know will help me alot, but in the meanwhile so many questions are going through me. I am currently on disability, for which I am lucky I know, but I also have two active children. Just keeping up with them is enough for me. They are 11 and 10, so I can explain this to them, but they really don't get it. Neither do my immediate family, my mom keeps telling me to go for a walk (grrrrrrrr!). I am worried that I won't beable to keep my job, I work as a dietary aide in a nursing home (alot of heavy lifting, repetiveness, as well as standing and walking all day). I am only 33 and the thought of dealing with this for the rest of my life scares me. I am a singlemom, 24 -7, kids don't see their dad. I have to work, no child support either. I obviously am venting right now. I realize alot of people have the same feelingings and problems I do. (sorry if i am whining). Question, have any of you suffered with high blood pressure with this? I have had it for the last 6 years, been tested for everything,i take medication daily, but I am just curious if there is any relation. Anywho, I have written enough for now, but I do feel better. I am having a good morning today, so I better get the housework done while I can. Thanking you in advance for any advice you can share. Have a great day!

[JodyGK]

Hi Singlemum, and welcome to the boards. I'm glad you found us. It's so helpful to have a place to come to where people truly understand what it's like to live with PA. Family and friends can be supportive, but they can never really understand. There are times that being able to come here and vent has saved my sanity. Never worry about "whining" here. We don't think you're whining at all -- just talking through some very real issues that you face.

I'm sorry I can't answer your questions about high blood pressure. Mine is usually low/normal. I haven't heard of any connection between high BP and PA, but I know from personal experience that pain can raise BP. Hopefully someone else will have some real answers on that issue.

Again, welcome to the boards. We're glad to have you here!

Jody

[patti2957]

Hello and another welcome!
Whine and vent away... I, like Jody, appreciate this community, truly a blessing. I have two children also, 8 and almost 10, along with a husband who helps out. My blood pressure is normal; I don't think hypertension is directly related to stress but you certainly seem to have more than your share - I can't imagine.
I am seriously considering writing a piece that could be used by doctor's offices for newly diagnosed PA patients. I just got my copy of Newly Diagnosed from the Arthritis foundation and couldn't find one mention of PA in the whole dang thing.
There is enough material on this board to supplement the "factual" info I've researched. It's amazing that your mother would tell you to go for a walk. My mother has scoliosis and has lived with chronic pain much of her life. This is horrible, but very helpful in that she certainly understands what I'm going through. Find some threads here that hit your button and email links to your friends/family. Take a look at www.butyoudontlooksick.com and read the spoon theory. And, keep venting.
best wishes,
patti

[JodyGK]

I am seriously considering writing a piece that could be used by doctor's offices for newly diagnosed PA patients. I just got my copy of Newly Diagnosed from the Arthritis foundation and couldn't find one mention of PA in the whole dang thing.

Hi Patti -- I don't know if you're already aware, but I thought I'd mention that the National Psoriasis Foundation has a brochure entitled "Psoriatic Arthritis." Members can download this and many other brochures for free at http://www.psoriasis.org/publications/booklets/ or request copies from the Foundation. Physicians who are professional members of the NPF also have access to the many excellent informational brochures that NPF publishes.

This not to say a patient-authored paper on psoriatic arthritis wouldn't be infinitely valuable, especially to the newly diagnosed. I think it would be most welcome, and I for one would love to read what you write. :)

Jody

[RichJ]

hi singlemumof2PA
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you

have a good night all

richard

[SandraJean]

Hi,

Welcome to the boards, but I'm sorry to hear about your pa. I have both p and pa and I understand your frustrations. Don't ever feel bad about venting and letting it all out. We all have been there and there is strength in numbers. This group of people have been very helpful and interesting and have given me strength.

One thing I wanted to mention when I read Jody's post is that Jody is a support group leader in her area. I have just started a support group in my area too and it's really great to meet people from your own area with p and pa. If you look on the front page of this site, there is an area to submit your zip code and then it will tell you where the closest place is for support groups. Try it and see.

I also wanted to mention that I do have high b/p and have been on medication for it for along time. I don't think my p or pa had anything to do with it. I also have high chlorestrol and high trigerates----so I have a lot of different areas to check. None were associated with my p/pa.

Take care and keep posting and let us know how you make out.

Sandy

[MikeK]

Hi Singlemumof2PA.

Welcome to the Board! :cool: Nice to meet you. I'm sorry to hear that you're going through such a rough time. Sorry to hear about your diagnosis. :(
As you can see, you've come to a very special place. A lot of nice and helpful people post here. More important, it's great to FINALLY be able to ask questions, vent exchange info and may even share some laughs with people who truly understand.

You asked:Question, have any of you suffered with high blood pressure with this? I have had it for the last 6 years, been tested for everything,i take medication daily, but I am just curious if there is any relation.I know that certain blood pressure medications (beta-blockers) are known triggers for psoriasis. I'm not sure if there's a similar relationship between blood pressure meds and PA, but it's certainly a possibility. It's something that you might want to explore further with you doctor. (I'll also try to research the issue for you. I'll let you know if I find anything.) In the mean time, here's a link to a previous discussion about blood pressure meds and psoriasis: http://www.psoriasis.org/forum/showthread.php?t=16262&highlight=inderal.

I hope this helps.

I hope that you feel better soon.

Good luck. Keep us posted and please don't be a stranger.

Mike

[singlemumof2PA]

Thank you so much for the info. I find this very interesting. Although I have had P (very mild, a small patch on my scalp) for many years, last year Inderal was added to my daily blood pressure meds due to the fact that I was having alot of Miagraine headaches. My doctor said this would help the headaches, as well as help my blood pressure, which is never controlled. I read the posts and find that I too experience this fluttering that is mentioned. I also have the occasional chest pains. I am going to make a point of mentioning this at my next drs appt for sure. My P has not spread since taking this, I am lucky it only seems to be in this one area all the time. Upon researching miagraines, I discovered red wine to be a trigger (which I really miss!) so I stopped drinking it and have had not had one since. I have had the aura (spelling) a couple of times but not the dibilitating headache. I am also on Mavik, a water pill, and singular daily. Plus now the celebrex and Meth. I hate the fact that I have to take so many pills every day when I am so young. It concerns me that I am on Celebrex, the pharmacist told me it tends to raise your blood pressure, yesterday when the dr took it it was 160/107. YIKES! I am hoping its that once the prednisone wears off my blood pressure go down. My bottom number has consistently been over 90 for years and it scares me. Anywho, thank you everyone for the advice. Its nice to have such caring and helpful people.

[MikeK]

Thank you so much for the info. I find this very interesting.[/quote]You're very welcome. I'm glad that we were able to help.

I discovered red wine to be a trigger (which I really miss!) so I stopped drinking it and have had not had one since.I hear you. I'm allergic to sulfites, which occurs naturally during the wine making process and is also added to wine (both red and white). I used to enjoy a glass a wine now and then. Unfortunately, I can't drink wine it more.

Since you're on methotrexate (mtx), I hope that you doctor stressed that you can drink alcohol because mtx can affect you liver. Here's a link to some additional info about mtx: http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/met1257.shtml.

I hope this helps.

Mike

[hjl1969]

I cried alot. A bit of a relief to have an explanation for all the weird stuff in the past. Did anyone else feel like the prednisone exacerbated OCD tendencies?

[singlemumof2PA]

I have cried alot too. I have just been weened of Prednisone and to be honest I am not sure. I do know that it did not work for me. Just took my last pill Sunday, had coritsone injected in three joints, on second injection of meth, and back on celebrex. Sorry can't help u. I was in so much pain I didn't know what end was up, let alone beable to define if the pills were making it worse, or better.
I appreciate everyone's comments and replies, but one question that no one has touched is the work issue. What does everyone do?? How has PA affected their jobs, and did some of you have to switch jobs?

[RichJ]

I cried alot. A bit of a relief to have an explanation for all the weird stuff in the past. Did anyone else feel like the prednisone exacerbated OCD tendencies?
hi heather,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you

have a good day all

richard

[MikeK]

I appreciate everyone's comments and replies, but one question that no one has touched is the work issue. What does everyone do?? How has PA affected their jobs, and did some of you have to switch jobs?I know that Karen (ouchyk) very reluctantly had to give up her job as a pre-school teacher, because the meds that she was taking (Enbrel) lowered her immune system to the point where she was constantly catching colds, etc. from her young charges. (Every time she caught a cold, she had to come off of Enbrel and it turned into a vicious cycle.) Here's a link to a very old discussion about PA and work (sadly, most of the people who participated in that discussion no longer post here): http://www.psoriasis.org/forum/showthread.php?t=4082.

I hope this helps.

Mike

[LoriASoCal]

Welcome singlemum,

I'm probably not the poster child for hope around here lately. You can read my posts as to how P and PA have affected me and my jobs. I think most people find something that works for them and they manage just fine.

When I was 28, not much younger than you, I found methotrexate and it kept me going for a number of years and let me work and raise my children. I'm grateful for the time it gave me. Don't worry about the whining. You couldn't possibly be as good at it as I am. <wink>

My blood pressure is very low 95/55 to 100/60, always has been.