1. < Autoimmune Diseases

Psoriatic Arthritis: How do you manage PA and flares?

Posted by lemdjm @lemdjm, Feb 27, 2017

I am a 74 year old female who has had psoriasis for over 40 years. The psoriasis was present on my scalp and ears in flares from time to time. I never experienced joint swelling and joint pain until recently. About one month ago I experienced an abrupt onset of severe joint swelling in my hands wrists, feet, and neck with severe pain. At first I suspected that it might have been related to my oncology medication, Arimedex that I began taking approximately 4 months before my sudden joint problems began. Testing ruled out Rheumatoid Arthritis and Lupus. My oncologist did not think that the joint issues could be related to the Arimedex, however, he recommended that I suspend taking the cancer medication for 4 weeks while I was given oral Prednisone for 23 days (referred to as Pulse and taper). I am on day 22 of the Prednisone and the joint swelling and pain is no longer present. My oncologist wants me to resume the Arimedex, however, I am afraid that the severe joint pain will return. I am hopeful that additional diagnostic testing will determine the underlying cause of my joint swelling. If anyone reading this has had similar problems or any information related to my situation I would be interested in your comments. Thank you.
lemdjm

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jun 7, 2017
In reply to @fransav "Hi! I've had PsA for many years, I am now 70. Been on Methotrexate, Azulfadine, &..." + (show)
@fransav

Hi! I've had PsA for many years, I am now 70. Been on Methotrexate, Azulfadine, & then finally Enbrel. Developed BOOP (lung disease), then MAI, so I needed to come off biologics. Went on Otezla that worked for a little over 2 years, then it stopped working! I'm in tremendous pain, and using prescription strength Advil. Ive been placed on meds for the MAI ( 3 antibiotics, 3X a week for 12 to 18 months) & hopefully, after 3 months, I can go back in n the biologics. Does anyone else have a similar situation? Thank you.

Jump to this post

Hello @fransav. I merged your post about Psoriatic Arthritis in to an existing conversation about PSA. I did this so you could meet a few of the other members talking about PSA that may be able to comment on some of the experiences you have had.

@fransav, I see that you had posted a picture in your discussion, were you trying to upload that picture as your profile picture?

REPLY
oldkarl | @oldkarl | Jul 3, 2017

My reply is simple. I have had psoriatic arthritis and other types for about 70 years. I have multiple forms of arthritis, cancers, amyloidosis, tumors, etc. All my systems seem to be dropping out.. urinary, circulatory, cardiac, pulmonary, etc. One simple piece of advice for everyone over age 60. Have two simple tests done: (1) Serum FreeLightChain, paid for by Medicare. Any positive reading of any level indicates a possible serious problem with protein mid-folding, and anything above 20 mg/Liter should be considered by a top lab, such as Mayo, B&W, Sloan-K, Stanford. (2) 24-hour urine collection and assay. ANY positive response indicates the kidney is not doing its second job, filtering out wrongly placed protein pieces. My sFLC runs about 300mg/liter, or about 1.5 grams per day. This protein lives only about 2 hours (half-life) before dying and being deposited in some body tissue where it raises hell. At the same time, about the same amount of mis-folded protein is spewed out in our urine (1.5G in my case). This makes an easy marker for a quick semi-accurate dX. Have your doc order both the sFLC and th 24hr collection/assay. They are cheap (free on Medicare), easy (blood draw and urine collection), and probably the quickest indication of very serious problems. I think everyone should have them done about every ten years from age 50.

REPLY
peach414144 | @peach414144 | Jul 17, 2017

i do understand your pain and frustration. there are times i must use boots on both feet at the same time so i may walk (in pain) using a wheelchair in in between. and wrist braces. yet, still i laugh and sing. sometimes it helps. am 80 years of age and am wondering, would marajuanna help?????

REPLY
peach414144 | @peach414144 | Jul 17, 2017
In reply to @djfd "I after more than 25 years was diagnosed finally with psoriatic arthritis. It started out as..." + (show)
@djfd

I after more than 25 years was diagnosed finally with psoriatic arthritis. It started out as me having rash on face and ER doctor said it it was classic book lupus and sent me to an internal med at the clinic I was in. She said on no (without any testing) it was just fibromyalgia. I just kept getting worse and she just increased pain meds, that did not help and refused to send me to a rhemotologist ( sorry about spelling). She sent me to a neologist that did MRI of head and said everything was normal, even though I had a large Tumor in my nasal cavity, he said nothing about it.
Finally she retired and new PC sent me to rhemotologist and I spent six hours in her office and within two weeks was given the diagnosis of PSA with lupus tendonsies. Was put on methotrexate but had to stop because it was causing liver issues. Finally got approved for Otezla and am on started pack. Can't take humeral or the similar stuff because of skin cancer. All delayed treatment has caused me to have chronic iritis in both eyes and might go blind. Can't do anything that I loved to do even cook a holiday meal, I used to make totally homemade Rubens for my husband's b-day because his b-day is on Saint Patties day. I have now also developed an adrenal Tumor and adrenal indofitionsy, plus have heart issues and am only fifty. My husband helps me as much as he can but he has back and neck issues that the VA won't help him with (he is ex-navy). Plus I still have issues that have not been diagnosed. It seems that if you are not rich nobody cares.

I feel for you and hope you are with a team of doctors that will work together and that you trust. We just moved to east TX because we lost our jobs running a ranch because of our medical problems even though they knew about it nine years ago when they hired us and this is all we could afford. It needs a lot of work that we can't do or afford but brought us closer to Houston where we are hoping to get better medical càre. A new pair of glasses only last me about a month and a half and insurance only covers one pair a year. They just put me on a cane, wear braces on both wrists and have to use hearing aids.

Jump to this post

correct. it is all in the MONEY.

REPLY
1 reply
peach414144 | @peach414144 | Jul 17, 2017
In reply to @fransav "Hi! I've had PsA for many years, I am now 70. Been on Methotrexate, Azulfadine, &..." + (show)
@fransav

Hi! I've had PsA for many years, I am now 70. Been on Methotrexate, Azulfadine, & then finally Enbrel. Developed BOOP (lung disease), then MAI, so I needed to come off biologics. Went on Otezla that worked for a little over 2 years, then it stopped working! I'm in tremendous pain, and using prescription strength Advil. Ive been placed on meds for the MAI ( 3 antibiotics, 3X a week for 12 to 18 months) & hopefully, after 3 months, I can go back in n the biologics. Does anyone else have a similar situation? Thank you.

Jump to this post

sorry to say i have the same situation. perhaps there is not enough experimentation to help this medical condition because there is such a small percentage of people that would benefit to purchase the created medication. and therefore there is not enough money to be made for all the time involved to create it. as a small example, i have both psoriatic and rheumatoid arthritis plus sjogrens, and diabetis, hypothyroidism, stage 3 kidney, high blood pressure irregular heart beat, veins, macular degeneration and gloucoma etc., etc. i am a walking pill. HOWEVER, I AM AN 80 YEAR OLD WOMAN AND WHEN I AM OUT OF THE BOOTS I GO DANCING SATURDAY NIGHTS. WHICH IS A RARITY. STILL NEED SOME SORT OF MEDICINE FOR RELIEF OF THE PAIN BUT NOT CONTROLLED SUBSTANCES. THINK I SHOULD BUY STOCK IN ADVIL.

REPLY
peach414144 | @peach414144 | Jul 17, 2017

terrible pain and cannot use aspirin (advil) due to kidney disease. tylenol does nothing, zero, zero, zero. wonder who holds stock in this medicine. makes a person want to move to a state that permits legal suicide. but no, I WANT TO LIVE. HOWEVER, IT GETS HARDER AND HARDER. SO, TO HAVE A BETTER QUALITY TO LIFE: I USE ADVIL. (will not use controlled substances. 80 year old woman) do you think marajuanna will help?

REPLY
1 reply
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 17, 2017

Hello @peach414144,

You will notice I moved your message to this discussion so as to bring similar conversations together, and so that you can meet other Connect members talking about psoriatic arthritis.

I'd also encourage you to view this discussion: Rheumatoid Arthritis (RA) - Introduce yourself and meet others: https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/

Meanwhile, I'm tagging @kozlo52 @blindeyepug @barneythe2nd @nanke99 @vickiekay @tbeckys @iman_im @lisa_sj99 @1825 @callyrae @jewel8888 @boomerexpert, and hope they will join this conversion with their insights to help you find some relief.

On Mayo Clinic Connect, we have an active discussion on marijuana and pain relief, which you may wish to view:
CBD: https://connect.mayoclinic.org/discussion/cbd/

REPLY
peach414144 | @peach414144 | Jul 19, 2017
In reply to @djfd "I after more than 25 years was diagnosed finally with psoriatic arthritis. It started out as..." + (show)
@djfd

I after more than 25 years was diagnosed finally with psoriatic arthritis. It started out as me having rash on face and ER doctor said it it was classic book lupus and sent me to an internal med at the clinic I was in. She said on no (without any testing) it was just fibromyalgia. I just kept getting worse and she just increased pain meds, that did not help and refused to send me to a rhemotologist ( sorry about spelling). She sent me to a neologist that did MRI of head and said everything was normal, even though I had a large Tumor in my nasal cavity, he said nothing about it.
Finally she retired and new PC sent me to rhemotologist and I spent six hours in her office and within two weeks was given the diagnosis of PSA with lupus tendonsies. Was put on methotrexate but had to stop because it was causing liver issues. Finally got approved for Otezla and am on started pack. Can't take humeral or the similar stuff because of skin cancer. All delayed treatment has caused me to have chronic iritis in both eyes and might go blind. Can't do anything that I loved to do even cook a holiday meal, I used to make totally homemade Rubens for my husband's b-day because his b-day is on Saint Patties day. I have now also developed an adrenal Tumor and adrenal indofitionsy, plus have heart issues and am only fifty. My husband helps me as much as he can but he has back and neck issues that the VA won't help him with (he is ex-navy). Plus I still have issues that have not been diagnosed. It seems that if you are not rich nobody cares.

I feel for you and hope you are with a team of doctors that will work together and that you trust. We just moved to east TX because we lost our jobs running a ranch because of our medical problems even though they knew about it nine years ago when they hired us and this is all we could afford. It needs a lot of work that we can't do or afford but brought us closer to Houston where we are hoping to get better medical càre. A new pair of glasses only last me about a month and a half and insurance only covers one pair a year. They just put me on a cane, wear braces on both wrists and have to use hearing aids.

Jump to this post

i am in the same state of health. the conclusion i have come to is: learn the language of the countries that have the free health care systems and move there. why we here in america cannot have the same care? no wonder some of these countries laugh at us. what a world. i have wonderful health coverage and am not wealthy and am still treated badly. still i think quite a large percentage of doctors today are in it only for the money. i have had a few tell me so. bad attitudes! this country has changed in many ways.

REPLY
peach414144 | @peach414144 | Jul 19, 2017
In reply to @fransav "Hi! I've had PsA for many years, I am now 70. Been on Methotrexate, Azulfadine, &..." + (show)
@fransav

Hi! I've had PsA for many years, I am now 70. Been on Methotrexate, Azulfadine, & then finally Enbrel. Developed BOOP (lung disease), then MAI, so I needed to come off biologics. Went on Otezla that worked for a little over 2 years, then it stopped working! I'm in tremendous pain, and using prescription strength Advil. Ive been placed on meds for the MAI ( 3 antibiotics, 3X a week for 12 to 18 months) & hopefully, after 3 months, I can go back in n the biologics. Does anyone else have a similar situation? Thank you.

Jump to this post

yes. i have many, many health problems including rheumatoid and psoriatic arthritis. tylenol does NOTHING for pain. advil works but cannot take it because of the kidneys. sooooo, i take the advil and will die sooner, hopefully before i go blind because of the many health problems. so there you go, either quality or quantity of life. enjoy what you can while you can. (perhaps we can go back in time and start a commune to assist each other emotionally.)

REPLY
djfd | @djfd | Jul 19, 2017
In reply to @djfd "I after more than 25 years was diagnosed finally with psoriatic arthritis. It started out as..." + (show)
@djfd

I after more than 25 years was diagnosed finally with psoriatic arthritis. It started out as me having rash on face and ER doctor said it it was classic book lupus and sent me to an internal med at the clinic I was in. She said on no (without any testing) it was just fibromyalgia. I just kept getting worse and she just increased pain meds, that did not help and refused to send me to a rhemotologist ( sorry about spelling). She sent me to a neologist that did MRI of head and said everything was normal, even though I had a large Tumor in my nasal cavity, he said nothing about it.
Finally she retired and new PC sent me to rhemotologist and I spent six hours in her office and within two weeks was given the diagnosis of PSA with lupus tendonsies. Was put on methotrexate but had to stop because it was causing liver issues. Finally got approved for Otezla and am on started pack. Can't take humeral or the similar stuff because of skin cancer. All delayed treatment has caused me to have chronic iritis in both eyes and might go blind. Can't do anything that I loved to do even cook a holiday meal, I used to make totally homemade Rubens for my husband's b-day because his b-day is on Saint Patties day. I have now also developed an adrenal Tumor and adrenal indofitionsy, plus have heart issues and am only fifty. My husband helps me as much as he can but he has back and neck issues that the VA won't help him with (he is ex-navy). Plus I still have issues that have not been diagnosed. It seems that if you are not rich nobody cares.

I feel for you and hope you are with a team of doctors that will work together and that you trust. We just moved to east TX because we lost our jobs running a ranch because of our medical problems even though they knew about it nine years ago when they hired us and this is all we could afford. It needs a lot of work that we can't do or afford but brought us closer to Houston where we are hoping to get better medical càre. A new pair of glasses only last me about a month and a half and insurance only covers one pair a year. They just put me on a cane, wear braces on both wrists and have to use hearing aids.

Jump to this post

Not all of us have the money to move to another country, believe me, I would if able and could afford,. I can not even hold silverware anymore, dry sandwiches suck, and husband is also disabled. Psoriatic arthritis is not my only issue, I am going to go blind unless they find a new med because what this has done to my eyes, o can not take most drugs because I have skin cancer, check your facts before you tell everyone to move unless you are willing to pay for us no-income (because we can't anymore) to move, then I'm on board.

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