Moanalogue - March Edition

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SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 3/2/2010 12:54 AM (GMT -7)   
Hi everyone,
Welcome the month of March. It is now Autumn in Australia, so I am looking forward to the cooler temperatures. It must be Spring for the Northern hemisphere now - what a lovely season:-)
Im srill dropping the pred and am now down to 2.5mg and dont I feel iteyes  I ache all over and each morning wake up with something swollen and aching - UGH. Thank heavens for heatpads.
 
Hope everyone else is doing ok.
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/4/2010 9:31 AM (GMT -7)   
The U.S. is still getting hit by some heavy storms, but Spring is around the corner in SoCal (though, we're getting more rain than usual - we need it, though). We had a record-breaking storm a few weeks ago.
 
Sorry to hear you're already reacting to the drop in prednisone. That's awful. Is there anything you can substitute while your body adjusts, like an Ibuprofin substance? (I think it's called something different in Austrailia - but our name brands are Motrin and Advil.) I know you have to be careful with Chrons, but is there some type of anti=inflammatory drug that won't affect it?
 
I'm curious to ask people here if they have noticed a difference in generic brands of meds. I've been on plaquenil for many years and my pharmacist has been special ordering a particular brand for me (long story, but bless his heart!), but last month I got a different brand by accident. I decided not to take it back and try it and have been taking it for about 3-4 weeks. The last 2 weeks I have had more pain/flare than I have had in a long time.  It's been raining and I have to wonder if it's a coincidence or the different generic med. I didn't have this bad of issues from the storms in January.
 
Take care everyone! It's almost the weekend! **
 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/5/2010 3:06 PM (GMT -7)   

Hi everyone,

Camama - With generic brands, if its only anti-biotics I will take the generic brand, everything else I wont. That is strange that this has maybe affected you. Heres hoping it is just the weather:-)

My aches and pains are manageable, just there and annoying - I keep thinking that it may get worse throughout the day but so far so good. You are right about the anti-inflamm.s they kill my gut, so I cant take anything like that. So do painkillers, although I have yet to try the patches, so next time I am in extreme pain will mention them to PCP as an alternative to oral painkillers.

Hope its stopped storming over there and you start to get some beautiful spring dayssmilewinkgrin

Take care

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 3/13/2010 3:04 AM (GMT -7)   
Hi Jo,
 
Could help but chip in on your discussion re: patches for pain..... I've tried them and they did nothing for me, Jax I understand if my memory services me well tried them and they were great for her, but it's worth a try when next you need something.
 
Keep well and I'm sure we will be talking soon.  Jax are you still out there??? smilewinkgrin
 
Peggy Baggins
 
AS - High Blood Pressure - Irregular Heartbeats - High Cholesterol - Insulin Resistants Disease
Meds: Remicade, Methotrexat, Micardis,  Verapamil,  Lipitor,  Metformin


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 3/13/2010 7:10 AM (GMT -7)   
Hi Jo,
I am currently on norspan patches for pain relief and Im not finding them to be of a lot of help either, but because I have an ileostomy most tablets go straight through my stoma. I hope the patches work for you, even though I still feel pain Im thinking I am probably in less pain than I would be if I didnt have any pain relief. The thing I hate the most is feeling tired from both the methotrexate and the patches. My hope is they find a miracle cure for this lousy disease. Take care and hope the pain eases for you soon

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/13/2010 11:04 AM (GMT -7)   
painkillers sounds nice! shakehead  my joints have been hurting so much, I feel like I need a body brace lately.
 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/13/2010 3:13 PM (GMT -7)   

Hi everyone,

I must admit Im scared of taking painkillers as the one time I took them I was 'off my face' for days - nobody can afford to be like that - we all need to function properly. Im not sure if the patches are like that, I guess being a painkiller they are, so that scares me.

Camama - I would love a brace at the moment too - especially for my neck, somedays my head fells like 10 tonnes and will snap my neck (only way I can describe it:-) )

andorable - I want a cure toosmilewinkgrin

Mags - thanks for the tipssmilewinkgrin

Take care all.

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/13/2010 11:53 PM (GMT -7)   
I hear ya! My shoulders/neck/and head have been awful. Had a migraine Thursday night, thought maybe I was going to die, it was so horrible. I think I need to mention this to the dr next time I see him, this is the 3rd time this has happened in 6 months - and the back of my head is tender (bruised feeling) to the touch.  Does that happen to you?
 


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 3/14/2010 1:10 AM (GMT -7)   
Gosh you two (Jo and CaMama) sound like your really suffering at the moment you poor things.
I'm two weeks away from my next remicade infusion and so feeling it right now, I get about 2/3 weeks relief (of sorts but only in the back) and then all the aches, and pains return, so feeling sore myself along with you at the moment.
 
Jo I didn't feel any different when taking oral drugs or patches for pain relieve.  I waited for it to kick in thinking this would be a 'trip' yeah but nothing. I told my sons that it's just as well I didn't waste my youth taking or even trying drugs as apparently it would have done nothing for me.smilewinkgrin   My boys still think it's funny that I'm 54yrs old and never even been offered a drug let alone take one, well that is until this AS started along with the other problems when I hit the big '50'. Been all down hill sinceshakehead
 
Hope you both have a better week ahead.
 
Peggy Baggins
 
AS - High Blood Pressure - Irregular Heartbeats - High Cholesterol - Insulin Resistants Disease
Meds: Remicade, Methotrexat, Micardis,  Verapamil,  Lipitor,  Metformin


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/14/2010 2:06 AM (GMT -7)   

Camama - Your headache sounds like the ones I get. My PCP diagnosed them as Neuralgia - I call them my 'massive headaches:-) '. I use a heat pack on my head but it travels around my skull and face and it hurts to be touched - is that the same as you?  Everytime I get one I think I am dyingeyes  The Dr. also said it could be a side-effect from the Humira - who knows. I hate them and I get no warning that its coming. I end up popping 8 panadols which hardly do much. I was getting them at least once a fortnight, random days, and they last for hours/whole day - UGH.

Mags - I didnt take drugs either when I was young, but the effect strong meds have on me would have made me a cheap druggieyeah When I had my bowel resection they told me to hit my morphine pump before trying to get out of bed, I had barely got out of bed before I hopped back in to sleep for a couple of hourstongue .

(((HUGS))) to all of us that are feeling achy and sore this week - hopefully next week is better for everyone.

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/14/2010 2:17 AM (GMT -7)   
Yes, my face, jaw...everything is pounding and pulsating! It is awful. The most scary part is, I'm grossly overweight right now...so I then get stressed and worried that I'm about to have a heart attack. sad  My neck and shoulders ache and hurt with slightest pressure too.
 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/14/2010 2:25 AM (GMT -7)   
Camama, you are up early this morning:-)  I have noticed my neck hurting but not my shoulders and pulsating is the way I would describe it too. Go and see you PCP, see what they can do for you, even just having a reason for them happening will put you at ease.

Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/14/2010 2:38 AM (GMT -7)   
Sadly, I have not gone to bed yet. shocked  It's 1:30 a.m. here and we move the clocks forward an hour in just 30 minutes.
 
I have a physical on the 31st and see my rhuemy the next day. I will mention it to both doctors. Thanks for sharing, good to know it's not just me.
 
Night**
 
 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/14/2010 6:01 PM (GMT -7)   

It's horrible that Im excited about someone else with the same pain as me, but Im glad to have you to talk to about this:-) . I hope you get some answers from your Dr.s I would be interested if they think its one of your meds causing it (like my Dr.) or the RA itself.

Please let me know when you know:-)

Hope you finally got some sleepsmilewinkgrin

Have a good day.

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 3/16/2010 3:08 AM (GMT -7)   
Jo,
 
Your not horrible at all.....I can understand that it's good to hear that your not alone and somewhere someone is suffering the same things as you.  Maybe like you are already you can swap stories and keep each other informed.
 
Jo, I do hope Jax is o.k, it's been a couple of weeks since we've heard from her!  I'm sure it's just the computer connection thing that's holding her up?
 
Will be nice to get back to normaltongue
 
How's the breast these days?  How you feeling and what's happening with the job situation?
 
Speak soon.
 
 
Peggy Baggins
 
AS - High Blood Pressure - Irregular Heartbeats - High Cholesterol - Insulin Resistants Disease
Meds: Remicade, Methotrexat, Micardis,  Verapamil,  Lipitor,  Metformin


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/16/2010 3:03 PM (GMT -7)   

Hey Mags,

My breast is less swollen, so thats a relief. As for the job huntiing I have put that on hold till I have my eye op late April as I think the recovery for that will take up to 10 days (cant start a new job looking like that lol).

Yeh, Im wondering where Jax is too, seems an awful long time to wait for internet access.

Hope you are doing goodsmilewinkgrin

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/17/2010 11:40 AM (GMT -7)   
I agree, it's not horrible...it's a relief to finally have somone who is going thru the same thing and know it's not just you!
 


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 3/17/2010 5:51 PM (GMT -7)   
Hi all, I'm back!
Yeah our internet troubles are over I hope. New house new phone line new server, all conspired together to lock us out of any internet access. But all problems hopefully resolved and I am back to annoy you all again.
 
I feel a bit out of touch so will read up when I get a chance on the last few weeks.
 
Hope you are all well. I have been suffering from a viral infection and have a massive headache too. Can't blame it on the humira as I'm currently only on mtx and my pain patch.
 
The patch didn't work at the lower doses only once I got up to 32mcg per hour did it have any effect. Now I am on 50mcg patch of fentanyl it really works for me. Pain is totally knocked down. Not gone but manageable, I actually feel fairly normal on it. Not like I am on nothing but only slightly hazy. I feel relaxed, like I can cope with life. I'm fine to drive and work. My main complaint is I tend to overdo things and then really suffer afterwards. When you suffer chronic pain and you get these windows of pain free ness I tend to jump into them and over do things and end up in bed in agony! Its so hard to pace myself, I am having to learn the hard way exactly how much I can manage.
 
I would reccomend them to anyone. It has turned my life around, I hated living on pain killers, having 2 hours pain free then 2 hours of agony waiting for my next dose. This is so good, worth a try. I reckon Mags didn't have a high enough patch, 25mcg wasn't enough for me, my doctor kept upping the dosage every 3 days until it worked, then it wasn't until nearly 3 weeks on it that I really noticed a huge improvement.
 
Well lovely to be back, have to go to work now, golitho

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/19/2010 2:45 PM (GMT -7)   

Welcome back golithosmilewinkgrin

We missed you!

Sorry you have a virus, I had my flu shot on Thursday before I caught the virus my youngest daughter has.

Hope you have settled into your new home.

Look forward to seeing more of you now.

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 3/26/2010 5:11 PM (GMT -7)   
Hi guys,
 
On Wednesday this week I had an injection in my ankle/foot to help with pain, not only was the procedure dreadfully painful in it's self, but 4 days later and still in more pain than I had before!
 
I'm so disappointed in it all and feel I've gone 3 steps back and not forward.  My head was in the right place and had been since Christmas, I learnt to cope with the pain and adjusted life so I could deal with it. Now I feel out of control, and back to where I was before Christmas, I'm tearful, depressed and upset about the whole thing. I know they said it was only a slight chance it would work, and I told myself and others around me that I wasn't going to get my hopes up, but deep down I must have otherwise I wouldn't feel like this today.
 
I'm going to tell my specialist on Monday when I see him that 'that's it' no more trying this and that as nothing has worked in the past two years and I must just get on with life, take the drugs have the infusions and learn once again to adjust to it. I just can't go through this again, I'm over it.
 
Sorry just having a rant as I'm frustrated by the whole thing, it's no ones fault, I had to try, it failed but enough is enough.
 
Here endith the rant for today, tomorrow hopefully will be a better one.
 
 
Peggy Baggins
 
AS - High Blood Pressure - Irregular Heartbeats - High Cholesterol - Insulin Resistants Disease
Meds: Remicade, Methotrexat, Micardis,  Verapamil,  Lipitor,  Metformin


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/26/2010 10:28 PM (GMT -7)   
Oh, Peggy! I so feel for you!  Your post made me so sad, I know how you feel - I had a similar situation when my feet were first really bad.cry Big but gentle hugs your way!!!  Hang in there. The pain from the injection will subside. I know it takes time.  It's so frustrating not getting relief and constantly being shot down when you get a little hope. Prayers they find something soon that helps you out.

Try to rest and relax this weekend.
**
 
 
 


TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 3/27/2010 9:44 AM (GMT -7)   
Just wanted to drop in and wish everyone a great day.  {gentle hugs}.  Trying not to complain today...and wanted to send smiles to someone who might just need a little nudge from someone who understands what your going thru.wink smilewinkgrin
Sometimes just a little smile from a stranger can make a difference.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/30/2010 9:36 PM (GMT -7)   
Smiles right back at ya!
 
Never worry about complaining here....this is our place of sanctuary to get it all off our chests!
 


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/30/2010 9:40 PM (GMT -7)   
I forgot to add the smiles! :) smile  smilewinkgrin  turn  :-)  tongue 
 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/31/2010 1:05 AM (GMT -7)   
Thanks TayIsaturn turn smilewinkgrin smilewinkgrin
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis

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