Good Morning BlackJack
Glad you found us here, and I am very happy that you decided to post! Welcome to Healing Well... Hhhhmmmm were to start.. Well, first of all, I'd like to say thank you to CaMama for welcoming you to the forum as well as giving you some great advice. Thanks CaMama!
You're the best!
A lot of what CaMama said is spot on... I don't think she put it in her post, but she suffers from PA also... seems as though we are finding a lot of people have it, which is great, it helps with the diversity on this site...
I am sorry to hear about your relative and her baby. It makes me wonder what her rheumy was thinking? Before I got put on Enbrel, my rheumy asked me if I was pregnant, I replied No. He then asked me if I had planned to have more children in the future. Again, my reply was No. And he said, "Good, because you cannot go on Enbrel if you are pregnant or trying to get pregnant." I didn't ask for any other explanation other than that since my hubby and I have both been taken out of the gene pool.
I am sorry it has taken you 7 months to finally find a rheumy that has diagnosed you correctly. I don't know if you are familiar with my story, but here it is:
Oct 2003 - Noticed 4th toe on rt foot swollen and purple. Went to dr. Diagnosis: Jammed toe
Nov 2003 - Noticed toe wasn't getting better, went back to dr. Diagnosis: Hammer toe, due to jammed toe.
Dec 2003 - Noticed pain in toe was spreading to other toes. Diagnosis: Flat feet, you need orthotics.
Jan 2004 - Referred to podiatrist for orthotics. Did a bone scan. Diagnosis: You have multiple fractures in your toes, feet and ankles.
Feb - Dec 2004 - Underwent MULTIPLE tests, MRIs, Bone Scans, X-Rays, Labwork. Diagnosis: Neuroma? Arthritis? We have NO Idea (that is actually what my podiatrist said).
- The pain is now in both feet and 8 out of my 10 toes are swollen and purple. I start looking online to see what I can see about
my mysterious pain. On an arthritis website I find a little blurb about
PA. I clicked on the link and all my questions had been answered.
- Took all that I had printed off the internet to my Podiatrist to see if I had diagnosed myself correctly. His response? "Why didn't you tell me you had psoriasis?"
Mar 2005 - I get to see my rheumy for the first time. Within 10 minutes of looking at the plaques on my hairline, scalp and back and seeing my toes he says, "Yup, you've got PA. I'd like to start you on a relatively new drug called Enbrel."
Prior to Oct 2003, I had ALWAYS been very active. I am a 32 year old mother of 3, and I am in the Air Force. I am an aircraft mechanic, so I have to keep somewhat in good condition to be able to work the long hours, and do a lot of the heavy manual work. I read all the literature on Enbrel and saw a lot of the sites out there that HATE it and think it's the worse thing for you. But what it boils down to is what CaMama said, you've got to weigh your options. There are side effects for everything out there. I brought these same concerns up with my dr. I remember the conversation clearly...
"Lymphoma, did you say chance of lymphoma? Are you kidding me? " His response, "Rory (my real name), did you take birth control pills?" My reply, "Yes", Him: "Did you ever smoke, or have you ever been around 2nd hand smoke?" Me: "Yes." Him: "Do you breath air that has been polluted with carbon dioxide from car exhaust?" Me: "Yes, Ok. I get it. Everything causes cancer, right?" Him: "Pretty much. But with medicine you have to tell everyone that there is a chance, it is slight, but there is a chance. Tylenol, people use it all the time. Use it to much and it can destroy your liver. It's up to you, weigh your options. Try it, and if it's not right for you, then we can try something else." So I did. And since then, 95% of my plaques have cleared up. My toes aren't swollen anymore. I can walk without a limp now. I can stand for longer than 5 minutes. I can even dance again. I can chase my kids and my dog around the house and play. I can work on airplanes and not have to sit down to rest.
I too have a history of bad health. I have a whole truckload of things wrong with me auto-immune wise. My dad has high blood pressure. My mom has diabetes. My grandfather died of CHF. My grandmother died of a stroke. My aunt just recently had a stroke and both my sisters have thyroid diseases (as do I).
I get bloodwork done every 3 months to make sure everything is going ok with my body and the Enbrel. If you have a good doctor, he/she will continue to monitor you since you have a history in your family of multiple diseases.
Like my rheumy told me, the choice is yours. They aren't gonna force it on you. But for me, it has been a godsend. I also know people that it didn't do anything for and they are still out there looking. I wish you the best of luck BlackJack, it is a tough road. I know, we have all been there.
Please forgive my long windedness, but wanted you to know, that you are not alone in your plight. We all have very similar stories. And what works for me, may not work for you. Hopefully you've got a good rheumy now and they can steer you in the right direction.
I wish you pain free days, please let us know what you decide. - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds - Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots