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Rayman
Member
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Posted: Thu Feb 7th, 2008 22:29 |
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Hi Reenie!
How long did you suffer with Psioratic Arthritis BEFORE you began the MP?
I have had about three years now, so I'm wondering about the time implications for light sensitivity.
Thanks,
Ray
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Psioratic Arthritis, Arava, Methotrexate, Painkillers
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Reenie
Member
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Posted: Thu Feb 7th, 2008 23:33 |
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Hi Rayman and welcome! 
I don't think you can really measure your light sensitivity with one diagnosis I had or that you have. You see, Rayman, our bodies are all riddled with various degrees of illness.
To give you some idea, take a look at the Hypervitaminosis-D Symptoms
I had plenty of these symptoms long before I was ever diagnosed with PA.
It is my personal belief that my light sensitivity correlated more with my extremely high dysregulation of D initially, which then changed with time. My point is, the light sensitivity will change depending on how much you react (herx or immunopathology response) at any given time until you kill off enough bacteria to become more D regulated, but there are many factors affecting this.
I just don't think it's possible to know for sure how much light you can tolerate until you begin, but also how quickly or how slowly you proceed (some of that is determined by your immune system rather than you!) will also make a difference because some folks can blaze ahead more so than others even though they have lots of symptoms from light and IPR while others tolerate less.
BTW, I have lots of skin involvement too as evidenced in my psoriatic lesions so that may be different for you too, while some folks have more eye inflammation. All of these factors and more will affect your light reactions.
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Rayman
Member
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Posted: Thu Feb 7th, 2008 23:45 |
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Hi Reenie!
Thanks for your post.
I was prompted to write because of some things that Trevor had said about the seeming correlation between disease entrenchment (time between beginnings of suffering to the start of the MP) that kind of worried me.
My condition is really only about two years old, but very aggressive. Having said that, I have no skin manifestations, just chronic joint inflammation and pain.
Having lost my career to this illness, the family's financial future is dependent on my ability to work at the menial job I have at the moment.
So, extreme light sensitivity causes me serious concern as my only other recourse is Biologics. As we both know, taking this stuff is like trying to put out a fire by hosing the smoke. Time, as they say, is 'agin me.
Regards,
Ray
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Psioratic Arthritis, Arava, Methotrexate, Painkillers
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eClaire
Member
| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
| Posts: | 36 |
| Status: |
Offline
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Posted: Fri Feb 8th, 2008 14:40 |
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I don't really think you can predict light sensitivity by 1,25D measurement (dysregulation) or by the seeming onset of symptoms. It would be nice if it were predictable, but at this point, it is my understanding that we just don't know.
My 1,25D was only 48, much lower than a number of folk who started the MP while still working full-time jobs--I had been totally disabled for 4 years at the time I started the MP. I had extreme light sensitivity initially (but I had such a high level of IPR initially that my light sensitivity improved rather quickly--about 5 months--to levels that some very sick folk don't see for a year or two).
I have heard some MPers suggest that how light sensitive your eyes were prior to the MP might be somewhat predictive; I can't say that there's any evidence about that; however, I had been light sensitive for 36 years.
There's no way to know whether you'll get a bump up from Benicar symptom-wise and then have a predictable response to the antibiotics initially or feel worse from Benicar and have a steady response to the antibiotics.
One can hope that the seeming recent onset of the illness will bode well for you, but that is hope.
This much I believe, the alternative to treatment now is more difficult treatment later.
Hope this helps, Claire
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CFS/FMS/MCS/COPD/Hypermobility/IBS/GERD/osteop/tinnitus/neurop | Beg: 1,25D-48 25D-26.1 SED 1 Alk Phos 157 chol 299| diet mid-Oct| NoIRs| 12.3.06 Beni; Ph1 Mino 12.26.06,Restart 3.19.07 | ModPh2 6.22.07 M+C | 06.22.07 25D-13
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Reenie
Member
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Posted: Fri Feb 8th, 2008 15:36 |
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I agree with eClaire. There is no way to predict your light sensitivity. There are many folks that are able to continue working while on the MP while some seem to temporarily get worse and have to stop.
I was already disabled for many years prior to the MP and had taken methotrexate for nearly a decade, (off and on) along with Enbrel, steroids and Neoral. These drugs were mainly used for my skin symptoms as they were much more severe for me than the arthritic ones although they did help (somewhat and temporarily) to alleviate some of the fatigue and pain of PA as well as FMS.
Ray, I see your dilemma but I also do know if you don't do the MP, there is NOTHING that will help you improve. You look like a man in the prime of his life in your pic and if you continue on the meds and treatment plan you are on today, I have no doubt that you will continue to get worse and probably end up debilitated soon anyway and still very ill. The prognosis is not good without the MP.
I think you will need to rethink whether or not you want to get well or stay sick at whatever that cost may be. Your life is at stake and I'm sure you'd like to enjoy your family into old age!
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