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loopie89
New Member


Date Joined Sep 2013
Total Posts : 14
   Posted 1/14/2014 1:54 AM (GMT -6)   
Hi all,

I've been or prednisone for about 4.5 months, since the start of my diagnosis. I was initially put on a taper regimen but by the time I got to 5mg I struggled to function with all the pain that flared up (waay) worse than prior so I put it to 10mg so I could at least enjoy my holiday and I was much better then. Obviously because I did this without telling my rheumy (was very desperate), I put it back down to 5mg at the end of my holiday. Again, the pain flared up worse than before I was treated. So told my rheumy and she said I could go up to 10mg. Things did improve when I went back up but it still wasn't as good as the first time I put it up during by holiday.

I've unfortunately picked a few bugs along the way after starting azathioprine which really did not help (apparently viruses can cause flares). Long story short, by the time I got rid of everything, things eventually came back for a while, till I caught the next one. By then my rheumy said once I was over that I should try to decrease it my 1mg every 2-4 weeks depending how things went. So I tried, and well, I guess you know what happened. Got the okay to put it back up till the azathioprine kicks in. Basically, every time the dose gets put down and it doesn't work out, every time I put it back up, I never achieve the same effect again (ie: the amount of pain that gets taken care of decreases) so consequently over time, I'm in more pain than I was prior to diagnosis! I haven't caught any bugs since but my joints have not settled. My inflammatory markers have normalised so it's unlikely that the disease has progressively gotten worse, and my rheumy said joints weren't swollen (well, as of the last time I saw her).

This is completely doing my head in because it's not logical! How can I be in more pain because of treatment? I have fibro too - could it be sensitisation of pain pathways because I was predisposed to? (Don't even know if that theory even makes sense/is possible)

Has this happened to anyone else? I find this MUCH harder to come to terms with compared to the diagnosis itself, perhaps because I thought diagnosis meant I'd be treated and will feel better.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/14/2014 7:29 PM (GMT -6)   
Fibro can give you a lot of the same pains as lupus.
I always feel worse when I taper off a round of pred. I feel terrible for about three days then feel normal again.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 1/14/2014 9:44 PM (GMT -6)   
Sometimes we feel worse before we feel better. Even though your inflammation markers are not increasing, your pain levels certainly can increase. One way some Drs diagnosis Lupus from Fibro is this -- it is well known that Prednisone helps Lupus pains improve, while it doesn't have much effect on Fibro. Or it could be that your Lupus is acting up more than it was before your diagnosis.

Lupus is known as the disease of 10,000 faces, because it is so unpredictable from person to person -- exact same treatment, one may get better, one may get worse.

If you start with 10 mg pred, and are dropping 1 mg every 2-4 weeks, how low do you go before having more pain? Sometimes it just takes a while -- and if you are at say, 7 when you start feeling more pain, go back to 8 for a few more weeks then try again. Don't jump up to 10 unless 7,8,9 for 2-3 days each doesn't help. (Unless your RHEUMY says something else specific). You do have a rheumy that is treating you, right?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

loopie89
New Member


Date Joined Sep 2013
Total Posts : 14
   Posted 1/15/2014 3:08 AM (GMT -6)   
Yep, I'm under the care of a rheumy. The thing is, this increased pain I seem to have acquired has a completely different "property" to what I had previously, even when the official thing was just Fibro. I've never had this kind of pain - it's bewildering.

I went down to 9 mg and gave it just over a week. I thought things would probably flare for a few days then settled, but the pain just got worse and it was getting in the way of work (can't exactly concentrate very well with pain). So I went back to the 10 mg (I also had a wedding cake to make so had to be functional). My rheumy did say that if I went down and things flare I could go up to 10 mg and my azathioprine would be increased. So now we wait for azathioprine to fully kick in but even after going up to 10 mg, whilst it has prevented it from worsening markedly, I never fully "recovered" to what I was before I went to the 9 mg even before I made the wedding cake and over-exerted. This is my first week back at work this year and I don't think it's helping either... pain, fatigue and head-wise. I just feel like curling up in bed and not getting out.

rjbeck
Regular Member


Date Joined Feb 2008
Total Posts : 255
   Posted 1/15/2014 6:01 AM (GMT -6)   
Has your doctor mentioned avascular necrosis? Because of the long term use of prednisone you could have the beginings of AVN. the only way to tell is by having an xray of the joints that are hurting. I hope it's not avn. Take care and feel better....
Avascular Necrosis (AVN) in 6 joints. hips,knee's and shoulders.
Major chest surgery:Thoracotomy with decordication causing
Bronchiectasis and Severe restrictive/obstructive pulmonary disease
MED'S-Methadone 100mg's. Morphine 15-IR 1-tab TID
Healthy up to 2005 38yr's old-now 47 My ninth year battling CP and other problems.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 1/15/2014 10:24 AM (GMT -6)   
I would suspect the pain to be related to the fact that you are back to work -- concentrating hard, more stress, more activity. These can all aggravate Lupus!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

loopie89
New Member


Date Joined Sep 2013
Total Posts : 14
   Posted 1/15/2014 9:16 PM (GMT -6)   
rjbeck said...
Has your doctor mentioned avascular necrosis? Because of the long term use of prednisone you could have the beginings of AVN. the only way to tell is by having an xray of the joints that are hurting. I hope it's not avn. Take care and feel better....


No. The pain hasn't just recently started. It dates back to September last year when I would have been on in for less than a month. Surely it can't be that soon... From what I gather it's usually the larger joints. Mine are primarily fingers and toes, wrist & ankle to a lesser degree.

loopie89
New Member


Date Joined Sep 2013
Total Posts : 14
   Posted 1/15/2014 9:17 PM (GMT -6)   
Lynnwood said...
I would suspect the pain to be related to the fact that you are back to work -- concentrating hard, more stress, more activity. These can all aggravate Lupus!


Pain pre-dates my return to work. Obviously things have worsened somewhat this week for the very reasons you've cited.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 1/15/2014 11:41 PM (GMT -6)   
I also have fibro - had been diagnosed for 10 years before the lupus type stuff came into focus. I do think the combo makes it very hard to sort things out and I definitely had some increased pain issues for over a year after the positive ANA and inflammatory markers were identified and Plaquenil was started. The fatigue was disabling. I never knew on any given day what I was going to feel like - nothing made sense. Now, oral Prednisone can dig me out of a hole when I really need it, but coming off is awful. Likewise - injected steroid for tendonitis/joint pain etc. can be helpful, but it has also made the muscle pain and fatigue worse. It's really hard to deal with when the lupus/fibro doubles up. I'm not familiar with the other med you mentioned. In his book, Dr. Wallace talks about a fibro response that kicks in after a course of prednisone use - i.e. feeling increased pain and fatigue - but says it will usually go away after 2-3 weeks and shouldn't be confused with an actual need for ramping the prednisone back up.

I hope you can get some relief very soon. It took me a long time to have sufficient energy for even simple activities, let alone get back to former pursuits. Not sure I ever really have or will! But! It's very much better, I've learned to pay attention to the whispers in order to avoid the brick, and the flares are far fewer in number and much less intense. I am one of the luckier ones with no organ involvement and a relatively mild case.

Reducing sun and UV exposure, increasing rest, resisting the urge to keep pushing through exhaustion, alternating activity and rest, and attention to diet and other kinds of stress triggers, all helped tame the monster. I wish you all the best!
Lucy

loopie89
New Member


Date Joined Sep 2013
Total Posts : 14
   Posted 1/16/2014 12:13 AM (GMT -6)   
lucysgd said...
I also have fibro - had been diagnosed for 10 years before the lupus type stuff came into focus. I do think the combo makes it very hard to sort things out and I definitely had some increased pain issues for over a year after the positive ANA and inflammatory markers were identified and Plaquenil was started. The fatigue was disabling. I never knew on any given day what I was going to feel like - nothing made sense. Now, oral Prednisone can dig me out of a hole when I really need it, but coming off is awful. Likewise - injected steroid for tendonitis/joint pain etc. can be helpful, but it has also made the muscle pain and fatigue worse. It's really hard to deal with when the lupus/fibro doubles up. I'm not familiar with the other med you mentioned. In his book, Dr. Wallace talks about a fibro response that kicks in after a course of prednisone use - i.e. feeling increased pain and fatigue - but says it will usually go away after 2-3 weeks and shouldn't be confused with an actual need for ramping the prednisone back up.

I hope you can get some relief very soon. It took me a long time to have sufficient energy for even simple activities, let alone get back to former pursuits. Not sure I ever really have or will! But! It's very much better, I've learned to pay attention to the whispers in order to avoid the brick, and the flares are far fewer in number and much less intense. I am one of the luckier ones with no organ involvement and a relatively mild case.

Reducing sun and UV exposure, increasing rest, resisting the urge to keep pushing through exhaustion, alternating activity and rest, and attention to diet and other kinds of stress triggers, all helped tame the monster. I wish you all the best!
Lucy


Thanks for that, Lucy. Even after 9+ years of all of this, pacing is something I really struggle with. I think because for so long they could never find anything that was "wrong" I got into the mindset of pushing through to ward off the whole "you're just lazy/depressed" etc comments

The relationship between prednisone and fibro sounds interesting. Does it mention whether the usual pain ramps up or whether it's a different kind of pain? As I mentioned previously, I've never had pain of this type before (not referring to intensity but the "quality"/character of the pain. The usual pain in my knees, particularly at the end of the day is still the same in intensity and character. I don't know if that original pain in my finger and toes is still present because this new kind of pain is much greater in magnitude so if it's still there, it's being masked. I don't know... does this make any sense or am I going nuts?
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