When recently speaking to my Haematologist, she said that joint pain is not associated with APS. Has anyone else been told this? Rheumatology accept that it is but this Haematologist does not recognise this and says that because I have joint pain them APS is not Primary and must be associated with Connective tissue disease. For 10 years + I have been told that my APS was Primary as it is the only thing I test positive for along with many, many blood clots.
The same Haematologist has also said that she thinks that APS can and does cure itself as it burns itself out over time and once a diagnosis has been in place for some years it is likely to have disappeared.
Thankfully my Rheumatologist does not share the same views.
Written by
MrsBL
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APS is in the connective tissue family of auto immune diseases, so it can cause all sort of aches and pains just like the “flu” when we flare.
It’s true that it will not degrade the joints the way RA will, or impair the bones the way ankylolisi g spondylitis will. However, we do feel the pain of Hughes’s wrath in our muscles and veins when oxygen is low throughout our body.
Did I’d mention that flares make us feel like we have the flu, and that in turn will make us ache? Worth mentioning again. Especially when it coincides with a low inr… just awful stuff.
Well, I would advise the haematologist to look into research again. Joint pain is known to be one of the more common manifestations of APS . The largest long term follow up of APS patients, both primary and secondary quantified joint pains without arthritis as a very common manifestation (39%). There were several other studies describing joint pains as common. (8-40%). As for APS wearing it self out over time, that is also the first time I encounter such an opinion.
Would also add that my Rheumatologist says that the joint pain source is not yet clear. Could be lack of proper blood flow or sub clinical inflammation.
Ditto with me, UNTIL I had a hip replacement and what the surgeon saw made him think that a clot in the hip's blood supply may have contributed to my osteoarthritis. Its complicated. but since the circulatory system goes nearly everywhere in the body, subsequent clots can produce a wide variety of symptoms. Dr Hughes has said that if treatment for APS steps the symptoms.... there 's your diagnosis.
Yes, I just saw a new hematologist and he said the same. I tried to explain to him that all the new research (including data from the doctor who discovered the disease) is showing that APS affects almost every organ system to which he replied "aps is only a clotting disorder, all the other symptoms are from Connective Tissue Disease that should be managed by a rhuemetologist."I am now actively looking for a new hematologist. This doctor's knowledge is out of date.
HI, I agree with KellyInTexas aches and pains and sore joints etc, however I have multiple diseases, and certainly sorting out my Thyroid, plus B12 and other things like vitamin D, Folate and Ferritin certainly helped with my level of pain, I did have to chip away at things to try and improve things a bit. MaryF
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