Hi all - I went to my doctor and asked specifically what it was I had. (I had originally posted sero-negative RA with Psoriasisform Arthritis and then found out these are two different diagnosis!!! :o ) She said I am:
Psoriatic Arthritis - tho my skin is not that bad yet, she is one of those that believes it starts years earlier and needs to be dealt with before it becomes a major problem for me. PLUS I have a major marker of an immediate family member that has Psoriatic Arthritis - my father. (I remember as a child he had horrible scaly and scary elbows/ knees that would send him to the hospital with pain - big memory when I think of him and the mention of psoriasis)
She also explained I had Fibro - coming from my low back and hips, where I have major pain. I have auto immune issues/markers in my blood tests, making me diagnosised with Mixed Connective Tissue Disorder, and lastly I have MGUS.
I want to thank all those that hauled me up to get a proper diagnosis - I now know much better what is going on.
In the end she said that my flares at the moment where not as bad as they had been before/what sheās seen in me and that the MTX has been helping. The question of bios was iffy. She gave me the choice to stop and see what happens (as I have trouble with the side effects), go to 4 and 4 - 2 shots a week or go to a 6 - 1 shot (lower it to where I get help, but not bad side effects) Spring/Summer are the easiest on me and Iām thinking of just stopping for a while, until the fall comes.
Appears the pain is more Fibro which I can semi-tolerate with Advil. Prednisone helps with the PsA flares, tho I know not to take it often, and my faceā¦well that is still a struggle with the marks, I have some Raspberry cream that helps a bit. Iām leaning towards trying to manage more with natural productsā¦which I need to look into so I can avoid the MTX. We have gone thru a lot of other meds, and it is really the MTX that helps me the best when I really have pain etc. And I really dislike taking meds, especially with weight gain side effects - she knows this, so allows me to skip them. That being said - yes Prednisone is a major weight gain med! I take 5 - 5 mg in one shot, and thatās it for as long as I can hold off. Itās a balance for me of not having to take meds daily, but getting help when I need it. When the fire burns, out come the fire fighters.
Guess my one question is, after all this - has anyone found any natural products of help?
I have dx PsA & have been treated for 6+ yrs. I couldnāt use MTX- horrible reaction, so Rheumy started me on Humira. It worked wonderfully, until about 6 mo ago. She considered upping my dose, but I was concerned about some of the āpossibleā side effects (lymphoma). Iāve tried to help my body as much as possible with clean eating & exercise. In Jan she switched me to Cosentyx ( which I am unable to afford without patient assistance) I was approved, but there was mixed up stuff regarding doseage. I experienced horrific flare up pain in my hips & couldnāt get in a comfortable position. Iād been reading about water fasting & decided Iād try anything to get past the pain. I was also experiencing a skin lesion on my elbow ( new)ā¦ by day 5 of my fast, all pain subsided & elbow was not raised/ itchy. I continued for 14 days. By then, still no pain. You may take too much medicine for this to help, but fasting has been a tremendous way to ā resetā my immune system.
Methotrexate helped some with my symptoms, but I was losing a couple days a week to nausea, so my doctor dropped the dose and added enbril. The nausea is better. Weāll see what happens with the PA. Iāve got stuff to do.
My primary dr. Says a gluten free diet can help with inflammation. My chiropractor gave me a bottle of trace minerals that help a little. She says to take when I wake up restless due to discomfort to help with sleep. This is in addition to taking regular dose during day. Sorry I donāt know any other natural approach.
I havenāt really noticed that any natural products help muchānot enough for me, anyway. Before going on Enbrel, I tried everything. But itās really hard to keep up with any of them and there are so many claims that this or that will relieve your symptoms. I do think sugar intake should be limited, but not sure you can eat enough of any of the herbal things to make a difference.
Thanks Grandma J. I kinda figured there really wasnāt much out there. Lately Iāve been off the MTX completely and doing ok - not so much pain, better days (?) Iām still working at dealing with the MGUS diagnosis. Spring and Summer tend to be better for me
less pain etc. RA doc didnāt want to put me on Bios now, I think cuz of the MGUS. She gave me lots of choices with MTX that I could do.
Will see how it goes, off MTX.
Hugs
Cattarina
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Holding onto your beliefs limits your experience of life.
The natural things that work for me are more the management approaches, rather than products. By that I mean being really strict and regular with a good sleep routine, getting little bits of exercise wherever I can, eating well and so on. I use Zen arthritis (or sports - same formula in a different bottle), spray, itās just similar to tiger balm, but a spray makes it much easier to get it on my spine.
I have an MGUS too but neither my Rheumy nor Heamatologist is concerned about biologics with regards to it (was on Humira, just switched to Cimzia), and I did a lot of research myself as well, and it seems there is no connection that has been made between the two (multiple myeloma cells thrive in a high TNF environment - they even trialed one or two of the biologics at some stage as treatment, but they had no measurable affect, either positive or negative).
I have a friend that swears by a vitamin / anti-inflammatory drink, but itās so processed, itās hard for me to think of it as ānaturalā. I had it a few days, and had a good few days both on it and without it in a row, but I was also in the middle of a medication switch and other things. When I finally get my medication stabilized (have another small procedure next week so have to leave a gap for my Cimzia again), Iāll try the ānaturalā product for a few weeks in a row, then stop it, and post about it if it seems helpful.
Interesting Jen. Appreciate the input. I wondered about the bio and MGUS. I didnāt think it overly mattered. So it is because my inflammation is better that sheās suggesting wait a bit more for the biologics. Which is actually fine with me.
I will be interested in knowing how your ānaturalā product works! And yeah, if itās so processed I would wonder too about it being natural. I do find collagen powder helps at times. I use creams/sticks a lot too on joints with pain - seems to help sometimes.
I go for more blood work - which I think will be good as I donāt feel as much pain as before.
Cattarina
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Holding onto your beliefs limits your experience of life.
Iām not a doctor but I am keying in on one thing you mentioned for sure, and that is lower back and hip painā¦ Iāll share my experience.
I was told I had fibromyalgia for years, and do in fact continue to keep that diagnosis, too.
However, x-rays have now proven sclerosis of both SI joints, which typically can present as lower back pain and āhipā pain (likely from sacroilitis per my radiology report). This was the PsA at work, and not fibromyalgia which was initially diagnosed.
In fact, that painful area was my first and only complaint (besides fatigue and sciatica) for several years, and I started seeing a chiropractor for it when I was 16 and got my first job and car, and could get myself there.
The more I dive into learning about PsA, the more many, many pieces of my puzzle come together, and the past 40 years of seemingly random miseries all make sense.
Huh. THATās what I wonder too. Iāve had low back pain for years. Even as a child, I would ache. Now itās a warning system for me too. If I have something, eg the wrong dairy/too much etc, thatās where I feel it. Allergic reactions hit that first. I donāt think a lot of what happens to me is - just fibro. I donāt think my fibro is that bad either. I think itās more other stuff. And now Iām looking at MGUS/SMM as my blood is marking it. So now itās a tangle of which is it? PsA or MGUS pain? All I do know is as of last fall the fatigue and pain is simply different. Either diagnosisā¦I got myself a tattoo, suddenly itās to h*ll with what otherās think, I want to be happy.
Cattarina
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Holding onto your beliefs limits your experience of life.
I take turmeric, because I have read good things about it in connection with a number of conditions. I take vitamin D because my wife told me to. She claims to have good reasons for her demand. I eat a vegan diet because my wife is a terrible cook, so I have to do all the cooking, and sheās a 50-year vegan (except for eggs from our chickens). I donāt mind: itās an interesting challenge to create tasty food with such limited ingredients, and it IS a healthy diet. And, no: I havenāt found a way to make lentils palatable either, or eggplants, for that matter. I gave up drinking because I just love taking methotrexate so much. Itās an exciting life.
I make great lentils and eggplant, though alas, many of the recipes require meat to make them reaally delicious. But, when all else fails, go to the recipes of those who have been doing it longest - so if you donāt mind curry, get those Indian cookbooks out, because those guys can do some truly awesome things with vegan ingredients!
So I had to look MGUS up. Never heard of it at all. Not that that is surprising, soooo many different chemicals in our bodies. I work in supplements. Natural anti-inflammatory supplements are numerous. My personal favorite is Omega 3 fatty acids. Most common 1 is fish oil but one that flies off our shelves is black seed oil. Itās made from the cumin seed so it is hot. We carry capsules and the oil itself. I have a VERY sensitive tummy and knew I could not do the oil. Tried capsules, tummy was still on fire! Flax seed oil is very good too. If you need to drop some lbs high doses of flax seed oil can help too. Whoever said tumeric was right. Itās hot right now too. Bromelain is also good for inflammation and we sell tumeric (curcumin is the pain relieving part of tumeric) combined with bromelain. I hear yucca is good too but have no personal experience because we donāt sell it.
Ahhh, supplements and vitamins are funny things, arenāt they?
I once had a bad experience that was likely an interaction between St Johnās Wort and Tramadol. Never touched either since.
Did get me to thinking though, anythingās that has an effect, then must have the potential for side effects, so Iāve been pretty cautious ever since. Then some interesting recent research;
I tend to think if you discuss them with your specialists and they are ok with it, and you genuinely perceive a benefit, then they it is worth considering them as a complementary medicine. But I must admit Iāve stopped ātryingā things randomly after my experience and some recent research, like the link above, as well as a myriad of other conditions, like osteoporosis, where early-onset forms seem to have very little or no benefit from calcium supplements, and new treatments (eg Prolia) target an entirely separate processā¦
Ok, now Iām rambling. Iām borderline MGUS/SMM as well - but Iām not too sure thereās much we can do about that one! My Heamatologist likes to tell me at my level it doesnāt cause symptoms, whilst my Rheumy says itās quite possible. I think they just like passing the buck (both figuratively and literally )
Iāve worked in a pharmacy for 15 years and I canāt stress enough the importance of checking ALL supplements against what youāre already taking. As Jen75 mentioned, she had a bad interaction between a ānaturalā item and a prescription item.
There is no such thing as side effect free or interaction free. Everything you do, everything you put in your body, follows the basic rule āfor every action there is a reaction.ā
Please be careful. Please donāt experiment without checking with your pharm for interactions.
I donāt check with my pharmacy if I go eat in an Indian restaurant where they use a lot of tumeric in my mealā¦ and when I tell them what supplements I take I get a blank nod without them doing anythingā¦
Itās all in the scale! Youād have to eat around 2000 curries to even come close to just one little pillā¦ but I realise you know that already .
I can agree the blank nods can be annoying, and in some cases, dangerous. Both my GP and Rheumy knew about the two things I was taking, but never mentioned the possible interaction to me, which was disappointing. I didnāt have a regular pharmacist then. I do now, and they seem to be better at screening for those sorts of things.
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