No one has ever told me “don’t be afraid of them”…thank you for that. I guess I will get it out of the fridge. I really thought I could beat it by eating really healthy and exercising, but am getting tired of living in pain.
That is mine as well.
By the way this week is National Invisible Chronic Illness Week. Google it and you will find lots of information and inspirational stories about others like us, not just with PsA but with other illnesses as well.
I started on Humira last year, taking it from July til January. I thought I was symptom free b/c I didn't have any psoriasis and no arthritic flare up. I had done an intense cleansing diet of nothing but fresh fruit, veggies, brown rice and nuts/seeds. Unfortunately, stress and multiple surgeries this year put my body under too much stress and I am having my first flare up since all that. Now I kinda regret taking myself off Humira and I am starting it again once the mail order pharmacy gets it to me.
It was lovely not to have psoriasis for a while there and freakin' ecstatic not to have joint pain...
with this last flare up, I've now been diagnosed with Fibromyalgia on top of the PsA. I hope the Humira can help with that as well. I am also being started on Cymbalta. I hate that I have to be on so many medications, but I totally understand that the pain needs to be managed and stop the progression of joint damage.
I hope the Humira can bring the positive results again.
When I often read that fybromyalgia is diagnosed on top of psoriatic disease I wonder how this is done when it seems to me that symptoms are identical. I guess what worries me is some Docs seem to find it necessary to find more things to explain the wide range of problems we get with PsA and surely this just makes the mental side of being ill even more stressful. And stress makes us worse. And more medication. Not citicism but just wondering.
Well if you want my two bits worth, I don't believe that SOME dx's of fibro are correct. There is an entire department at Stanford University dedicated to pain physiology. They have done some amazing work. To put it in a nut shell at least SOME of the "Fibro" is actually caused by pain treatment. Hyperalgesia is found to be able occur in as little as 30 Days. Well meaning physicians exaserbate the problem by increasing med loads, and then the "fibro cycle" begins. This isn't scholarly:
http://www.thefix.com/content/when-juice-stops?page=all
This is:
http://www.ncbi.nlm.nih.gov/pubmed/16414554
There are many studies in fact Stanford has a whole department dedicated to it. The above study talks abiout the condition developing in as little as 30 days.....
Here's the thing the treatment for Hyperalgesia related tolerance is using many of the same drugs and interventions as now being used with classical Fibro. I've just got to believe SOME PsA folk coming up with a Fibro Dx after several years of Opiad Pain management have something that CAN be more easily treated. EVERYONE should read this article:
http://www.painphysicianjournal.com/2009/may/2009;12;679-684.pdf
From the Article.
"OIH should be considered in the differential when opioid therapy fails" Of more concern (to us) is the statement:
Neuropathic pain tends to
preferentially respond to non-opioid medications such
as antidepressants and anticonvulsants.
Followed by:
the practitioner is faced with several choices to diagnose and treat OIH:
1. Increase the dose of opioid and evaluate for increased efficacy (tolerance).
2. Reduce or eliminate the opioid and evaluate
(OIH).
3. Utilize opioids with unique properties that may
mitigate OIH.
4. Utilize specific agents that are NMDA receptor
antagonists.
The third option has become particularly attractive with the use of methadone and buprenorphine.
Methadone, although a pure mu receptor agonist, has
properties that may prevent or reduce OIH (27). It is
a racemic mixture in which the d-isomer is an NMDA
receptor antagonist. Methadone also displays incomplete cross-tolerance properties unique from other mu
receptor agonists which may create a niche role for it
in the treatment of OIH and other forms of intractable
pain, especially neuropathic pain. Anecdotal reports
exist of patients who have been thought to have OIH
and been treated with combinations of option 2 and
option 3 — i.e. reducing the dose of opioid (by 40 –
50%) and adding “low-dose” methadone (28).
and scariest of all:
. While reducing the opioid
dose, patients may experience transient increases in
pain or mild withdrawal which can exacerbate pain.
The hyperalgesic effect may not be mitigated until a
certain critical dose of opioid is reached. Patients often become frustrated and managing the appropriate
dose reductions often requires multiple office visits.
This can be extremely impractical in a managed care
environment. In the author’s experience, many patients simply give up and seek to resume opioid therapy elsewhere.
I'll stand by that if there is no increase in disease activity (that can be quantified) and you are requiring an increase in pain meds, there is a PROBLEM that will not be fixed by a change of dose. Its a slippery slope that no matter WHO you are will make the diseased worse in time, bet you can't tell I fell strongly about the use of (misuse) of pain meds can you???
Allan said:
When I often read that fybromyalgia is diagnosed on top of psoriatic disease I wonder how this is done when it seems to me that symptoms are identical. I guess what worries me is some Docs seem to find it necessary to find more things to explain the wide range of problems we get with PsA and surely this just makes the mental side of being ill even more stressful. And stress makes us worse. And more medication. Not citicism but just wondering.
Oh Thank you Everyone for your experiences and posts!! sorry have not gotten back sooner!! and yes i agree 100% what everyone is saying is true also to depends on the person and how far extent this disease hase progressed I'm guessing.
Although I'm quite a bad case like you say just to be managable and moving is great for me beats being in a wheelchair which before this was looking at. Also too got a new Gp he seems to think i should still be more pain free was the impression got from him. And to those who are trying to tackle with healthy diet the choice is up to you and i respect that but can i just say before was properly diagnosed I was a personal trainer always eaten healthy and every vitamins can think of still do but this disease still took over. Only until been put on medication ive found some improvement with out it no matter how well i eat or look after myself etc if im not on meds im in bed 24/7 in agony and cannot move so do believe they do help =) Thank you for all you comments appreciate it =)
Instead of Cymbalta, there is a new rx called Savella designed just for Fibromyalgia. It is the one I use and I love it.
Cynth said:
I started on Humira last year, taking it from July til January. I thought I was symptom free b/c I didn't have any psoriasis and no arthritic flare up. I had done an intense cleansing diet of nothing but fresh fruit, veggies, brown rice and nuts/seeds. Unfortunately, stress and multiple surgeries this year put my body under too much stress and I am having my first flare up since all that. Now I kinda regret taking myself off Humira and I am starting it again once the mail order pharmacy gets it to me.
It was lovely not to have psoriasis for a while there and freakin' ecstatic not to have joint pain...
with this last flare up, I've now been diagnosed with Fibromyalgia on top of the PsA. I hope the Humira can help with that as well. I am also being started on Cymbalta. I hate that I have to be on so many medications, but I totally understand that the pain needs to be managed and stop the progression of joint damage.
I hope the Humira can bring the positive results again.
Funny....I went to Cleveland Clinic. The Rheumy there told me that Fibromyalgia did not exist, it was not a disease, I had been misinformed. Thirty minutes later I saw the Neurologist, who assured me that I was having a flare of Fibromyalgia. When I commented what the Rheum said, he laughed and noted that it wasn't an immunological but a neurological disease. Many doctors label a patient because of their pain factor, but it has a lot to do with a sleeping factor. When we sleep (and I usually cannot unless I knock myself out with a few drugs--my son the Chemist calls it a "bomb"), some substances are released in the body that keep the nervous system functioning properly. When the person lacks sleep, the nerves get uncalled overstimulus, creating incredible pain. Since it involves the nerves, doctors tend to prescribe antidepressants, such as Cymbalta. Although it helps, a new antidepressant drug called Savella combines all neurological substances needed when there is a lack of sleep in the patient. I believe it is the only drug that has been created for the Fibromyalgia per se. I also take Lyrica. Besides being diagnosed with Moderate-to-Severe Fibro, I also have Insomnia, Hypersommnia, and Apnea. I have also seen three days and nights without sleep, and sleep studies without sleeping. My sister-in-law has suffered with Fibro for over 20 years, before anyone knew what it was. She also has sleeping deficiencies. Our bodies sleep whenever they wish, day or night, unfortunately, and sometimes no sleep at all.
tntlamb said:
Well if you want my two bits worth, I don't believe that SOME dx's of fibro are correct. There is an entire department at Stanford University dedicated to pain physiology. They have done some amazing work. To put it in a nut shell at least SOME of the "Fibro" is actually caused by pain treatment. Hyperalgesia is found to be able occur in as little as 30 Days. Well meaning physicians exaserbate the problem by increasing med loads, and then the "fibro cycle" begins. This isn't scholarly:
http://www.thefix.com/content/when-juice-stops?page=all
This is:
http://www.ncbi.nlm.nih.gov/pubmed/16414554
There are many studies in fact Stanford has a whole department dedicated to it. The above study talks abiout the condition developing in as little as 30 days.....Here's the thing the treatment for Hyperalgesia related tolerance is using many of the same drugs and interventions as now being used with classical Fibro. I've just got to believe SOME PsA folk coming up with a Fibro Dx after several years of Opiad Pain management have something that CAN be more easily treated. EVERYONE should read this article:
http://www.painphysicianjournal.com/2009/may/2009;12;679-684.pdf
From the Article.
"OIH should be considered in the differential when opioid therapy fails" Of more concern (to us) is the statement:
Neuropathic pain tends to
preferentially respond to non-opioid medications such
as antidepressants and anticonvulsants.
Followed by:
the practitioner is faced with several choices to diagnose and treat OIH:
1. Increase the dose of opioid and evaluate for increased efficacy (tolerance).
2. Reduce or eliminate the opioid and evaluate
(OIH).
3. Utilize opioids with unique properties that may
mitigate OIH.
4. Utilize specific agents that are NMDA receptor
antagonists.
The third option has become particularly attractive with the use of methadone and buprenorphine.
Methadone, although a pure mu receptor agonist, has
properties that may prevent or reduce OIH (27). It is
a racemic mixture in which the d-isomer is an NMDA
receptor antagonist. Methadone also displays incomplete cross-tolerance properties unique from other mu
receptor agonists which may create a niche role for it
in the treatment of OIH and other forms of intractable
pain, especially neuropathic pain. Anecdotal reports
exist of patients who have been thought to have OIH
and been treated with combinations of option 2 and
option 3 — i.e. reducing the dose of opioid (by 40 –
50%) and adding “low-dose” methadone (28).
and scariest of all:
. While reducing the opioid
dose, patients may experience transient increases in
pain or mild withdrawal which can exacerbate pain.
The hyperalgesic effect may not be mitigated until a
certain critical dose of opioid is reached. Patients often become frustrated and managing the appropriate
dose reductions often requires multiple office visits.
This can be extremely impractical in a managed care
environment. In the author’s experience, many patients simply give up and seek to resume opioid therapy elsewhere.
I'll stand by that if there is no increase in disease activity (that can be quantified) and you are requiring an increase in pain meds, there is a PROBLEM that will not be fixed by a change of dose. Its a slippery slope that no matter WHO you are will make the diseased worse in time, bet you can't tell I fell strongly about the use of (misuse) of pain meds can you???
Allan said:When I often read that fybromyalgia is diagnosed on top of psoriatic disease I wonder how this is done when it seems to me that symptoms are identical. I guess what worries me is some Docs seem to find it necessary to find more things to explain the wide range of problems we get with PsA and surely this just makes the mental side of being ill even more stressful. And stress makes us worse. And more medication. Not citicism but just wondering.
Curious, I have been wondering why with this chronic condition why does all these medicines not seem to help when a person is in pain. I remember before I was dx and my GP was prescribing me anti-inflamatories, pain medicines, MDX, folic acid and nothing worked. If these pain medicines do not work, is it possible one might have another problem? Are all the med working against each other? Why does one believe nothing works except the bio medicines. I have started taking Enbrel four weeks ago and I feel a great improvement but I cannot accept this for I am always worrying when I crash. What happens to the people who cannot take these new drugs? How do they get relief?