Got the scan. Not doing well at all lately

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babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 5/19/2006 3:48 PM (GMT -7)   
Hi guys.  I know I havent been replying much.  Sorry about that.  I think I mentioned about the doc appt.  Well, I had the bone scan done yesterday.  Started hurting pretty bad at the start of this week.  By today I couldn't walk for at least two hours after waking up and have been unable to loosen up.  If I stopped even for a minute I would have to start all over.  I never made it on trying not to take the NSAIDS until the bone scan.  Couldn't manage that one.  I don't think that mattered.  I screwed myself just by missing it for 24 hours.  I believe it threw me into a pretty nasty flare.  I am not kicking myself too hard though because I was starting to feel crummy before this kinda flu like and I mentioned that to the doc but of course when I got to my appt that friday I was starting to feel better. 
 
Anyway, the radiologist showed me all the uptake on my feet.  I asked why they weren't doing more than just the feet and he said that sometimes doc's just request what the patients says bothers them the most because whatever shows up there is probably what is everywhere else???  Hopefully that saved me some money anyway.  Back to the point.  From what the radiologist was showing me there was only about 35% normal bone left in my feet.  Both of them looked the same.  He wondered how I was walking on them at all.  All I said was barely. 
 
Well, by the morning I was done.  I was running a low grade fever.  And my knees and hips decided to chime in too.  Now I will agree that stress is a major factor in all of this.   (the ex is causing trouble lately) My hands are just starting over the last month.  Is there going to be a joint left unaffected???  I still managed to get to work.  Don't ask me why.  I do this all the time.  Finally, I gave in.  I couldnt wait until June 1st for my appt to get relief.  I knew they wouldnt have the scan results or the bloodwork and i didnt even ask for those.  I told them the situation and they said they would get right back to me.  Called me back in less than a half hour.  Told me the scan was abnormal.  Showed severe inflammatory process, put me on medrol pack and told me they will add on a training session for injections at my June visit.  I guess they might be able to tell me possible what type of inflammatory arthritis this is then?? Or does that really matter?  I was also told that i will feel much better by tomorrow is this true??? Does it work that fast???  I hope so.  Oh... This morning I was considering picking up a walker or cane or something because I fell twice trying to get to the potty after waking up... they NP said that I wont need that once the steroids kick in, but what if I get into another flare??? Just give me ideas... believe me I dont even want to buy a cane or walker at 31 years old.  I need a nap, but am so afraid to lay down because I will have to try and get up again.... I love you all.
 
bloo
dx: Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 600mg, Maxair, Advair 250/50, Diovan HCT 160mg/25mg QD, Synthroid .1mg QD, Women's One a Day,  Ultram PRN.
 
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 5/19/2006 4:22 PM (GMT -7)   

Bloo,  I'm so sorry to hear that you're doing so poorly right now.  If you have inflammatory arthritis, and it sounds like you do, I would imagine the steroids will help you.  I've not had arthritis as bad as what you have described, but I can tell you that when I took steroids, they did kick in pretty darn fast and I felt much better within 24 hours.  After 3 days, I felt 15 years younger.  I hope they work as well for you.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 5/19/2006 4:55 PM (GMT -7)   
hi bloo i am new on here but i did get medrol pack as my first intervention and it worked great for me initally. i felt immediate relief but when i decreased the dosage before i was done the pain was right back. that is why i have short term prednisone right now until my methotrexate kicks in. i know i question am i doing the right thing but i just know steriods help me right now and i need today to be ok! hope all goes well for you soon and they can prevent further damage. i am still researching that information all the time. hence my ability to check this site as lately i am on the web alot! good luck yalinda

babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 5/19/2006 5:24 PM (GMT -7)   
I do have a question. Is it normal for rheumatologists to go right to injections? I have never tried methotrexate? just every anti inflammatory ever made i think?
dx: Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 600mg, Maxair, Advair 250/50, Diovan HCT 160mg/25mg QD, Synthroid .1mg QD, Women's One a Day,  Ultram PRN.
 
 


RAGirl
Regular Member


Date Joined May 2006
Total Posts : 28
   Posted 5/19/2006 10:03 PM (GMT -7)   
Bloo...so sorry to hear you are going through all of this! Only 35% left? So sorry to hear...this may be why your doc is going straight to injections though. Some of the newer meds have been shown to reverse some of the damage. Also, my dr. told me she had to try methotrexate first because a lot of insurance companies won't cover the new meds until mtx is tried first. But maybe because your case sounds more severe, you have a better chance of being covered?

-Hugs

Jbrat
Regular Member


Date Joined Apr 2006
Total Posts : 116
   Posted 5/20/2006 5:54 AM (GMT -7)   
I just read your post about your scan. I feel for you. I keep having bone fractures. RIght now I have a left fracture foot and my right hip is flared up with bursitis. At least that is qhat the MRI showed 2 weeks ago. I had to go back o the walker. IF THE WALKER WILL KEEP YY0OU FROM FALLING, PLEASE USE IT!!! SORRY about THE CAPS, BUT i AM SERIOUS, IT IS ALOT EASIER THAN HAVING A BAD FALL.

Now I kow you are taking a dose pack. They are great. But I have been on long term steroids for close to 5 years. This is where I got into trouble. By being on them so long it has put me into having Addion's disease. I will have to be o steroids for the rest of my life. SOme low doese and right now 20 mgs. a day. The side effects of using steriods for so long are great, I have the bone fractures, my teeth are crumbing, I have the moon face, nervous and shakey, and large weigth gain. As of yesterday, I have gained over 100 pounds in the last 6 years or so.

I hope you get some relief soon. Oh, by the way, I am trying to get some wheels put on my walker, so I can travel fast and easier with it. With having chrondrits in my ribs even lifting the walker gets painful It is all a vicious circle soem days. I would love to get the walker with the wheels and seat, but I only have M'Care and I was told my co-pay would be from $60.00 to $140.00. I can buy a new one at Walmart for $100.00. So we are going to try to put the wheels o the walker I have first.

Here is a list of my meds. I keep trying to decrease or eliminate some but then I get sick again.

 

Accolate 20 mg                        Albuterol  2 mg                      

Atrovent 2.5 ml                        Celexa 20 mg                           1 a day

Flexeril 10 MG            

Florinef 0.1 MG                 

Fosamax  70mg               

Lasix 20 mg.  

Librax                          

Lidoderm Patches                        

Loracet 10 mg                         

Micardis 40 mg                       

Micro-K 10                            

Mobix 15 mg                           

Nexium  40 mg           

Potassium CL 10 MEQ            

Prednisone  5 mg                   

Premarin .0625 mg.                  

Tessalon Perles 100mg 

Zocor 40 MG                          

 

Calcium W/Vit. D                     3 per day (total 1800 mg.)

Vitamin D                                 800 I.U. per day

Centrum A-Z                            1 per day

Stool Softener                          2 per day

 

ALLERGIES:   Compazine, sulfur, imitrex

 

 I also have COPD, Addisons Disease, Osterarthritis, Osterporosis, Acid Reflux (GERD).Depression, (why I have depression, I'll never know). And just all over feel like crap.

 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 5/21/2006 2:02 PM (GMT -7)   
Hey bloo, how are you today? Please let us know how you are doing... Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 5/21/2006 2:40 PM (GMT -7)   
Thanks ducky. Today i see a larger improvement than the last two. I strongly believe it is the stress of the ex that has brought all this on so rough too. I think I am getting things together fairly well. i am starting the realize my limitations and putting things into perspective. From what little I know inflammatory arthritic diseases are progressive. Medications slow or delay their progression but it is still progressive. My outcome or response may not be as promising due to the delayed treatment (darned stupid doctors) but that doesnt mean I can't enjoy everyday things again and hopefully soon. Since I feel that stress is a major trigger in this and financial strains are huge for me I have decided to move into my parents for a while with my son. Actually this move for more than one reason. Help when I need it, more funds available for meds (this is gonna hurt), with more funds available I will also feel okay about taking time off when I should instead of forcing myself into work and prolonging a flare. The worst part of all of this is I will have to find homes for my kitties. But that was coming anyway because they are always under my feet and I just would hate myself if I hurt one of them. I cannot function or walk in the AM anymore.

I hope things will improve quickly and I know changes like these are big. I am not predicting the future, just trying to remove as much stress as I can so that I can continue to carry a full time job, live as normal a life as possible, and be prepared for the next nasty flare.

Does it sound like I am making the right decisions? A friend of mine told me that I act like it is going to be this bad forever... that isn't what I said at all.... but i also know that she doesnt get that the way I feel and how bad things are aren't just limited to my joints.

Thanks for caring

how are you?
dx: Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 600mg, Maxair, Advair 250/50, Diovan HCT 160mg/25mg QD, Synthroid .1mg QD, Women's One a Day,  Ultram PRN.
 
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 5/22/2006 8:49 AM (GMT -7)   
scool  Hey bloo -
 
I'm groovy, thanks for asking! yeah Have been super busy with work and the kids lately, with them getting out of school next week, it seems like I'm doing more work now than before!  nono    Oh well, it will be over soon!
 
I think you've got a very positive outlook on things.  You are doing what you need to do to take care of yourself and your son, and if that is moving home with mom and dad for a while, while you adjust to this disease, and get back on your feet... then so be it.  It's better to do that, than to suffer and just make things worse on yourself and everyone else involved. 
 
Yes, stress over emotional or financial matters can make everything worse and through you into a flare.  I have and ex too, and lordy-be, does he make me mad... then I go into a flare and I'm miserable, which in turn makes me even more mad 'cause I let him get to me... It's a vicious cycle, but you've done well in identifying it early on, so you can try and control it when it does happen...
 
I am glad you are doing ok today... I hope you continue to keep a positive attitude with this, that is key, the minute you start thinking it's got the best of you, the disease wins, and we can't have that! tongue
 
Hope you have a good day!  Talk to you soon!
 
Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/23/2006 5:46 PM (GMT -7)   

hey bloo,

thinking of you.  injections are right on!  go for it.  especially TNFs and DMARDs and biologics.

like yourself, the arthritis i have is extensive and multi organ and joint involved.  the rheummy put me straight onto Enbrel at the 1st consult.  it's been 3 years and had to switch twice on TNFs but i have to be on them for the duration.

it's the only thing that will keep me " goin' " so i'll be doing it!

you do have a great disposition and never lose that outlook!  i keep it too! and it gets me by mostly everything.

in my prayers always,

erin


Active, Severe RA. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred; Pentasan 4G; Imuran 50mg; Dilaudid; Diazepam; Avinza 30mg; Meclizine; MiraLax & too many others.

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