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cntrymom
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Date Joined Mar 2017
Total Posts : 21
   Posted 3/13/2017 2:33 PM (GMT -6)   
New here and I'm confused at the moment. I was told back when I was 18 (1985) after a car wreck, I would suffer from degenerative disease and have trouble working in my 40's as I worked as a waitress. They retrained me as secretary. Further on, I was having trouble with some pain and tried "advil" when it was new, because wasn't working and it made my neck stiff locked so to speak. Gave me a shot of steroid I assume in my late 20's early 30's, gave me samples of arthritis medicine, didn't keep taking them went on. Late 30's starting having more chronic pain, feeling more like I have the flu like aches most of the time, my PCP put me on ketoprofen, then tramadol 50 mg 3 x a day. Never tested positive for RA or anything, just possible OA by arthrist spec. 1 time. Changed PCP partially due to insurance & new one sent me to Pain Mgmt DR been taking the 50 of tramadols for yrs & she had added 100 mg. Tramadol xr now after a yr. she is taking me off all of it and IDK why. she hasn't give me a reason. Getting referral to new PM but thinking maybe I need an actual diagnosis of something wondering if I have Fibro or something? Any help or suggestions would be appreciated.

cntrymom
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Date Joined Mar 2017
Total Posts : 21
   Posted 3/13/2017 2:57 PM (GMT -6)   
Please I know I rambled, I just don't know if I should see an arthritis specialist, if they treat OA of the spinal area if that's what I have or if it's more. Right now I am on 800 mg of Ibuprofen 3 times a day and it's hard on my stomach and I still hurt. I'm scared no one is going to make me feel better anymore for some reason. I don't know what happened as to why is she is taking me off of it and not really giving me anything?

pitmom
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Date Joined Jan 2015
Total Posts : 2103
   Posted 3/13/2017 2:58 PM (GMT -6)   
Have you asked her why?
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

cntrymom
Regular Member


Date Joined Mar 2017
Total Posts : 21
   Posted 3/13/2017 3:03 PM (GMT -6)   
I did after they had labs pulled, but it was her Nurse Practicioner because she was out of the office and she didn't know why. But then I was told I was in violation of contract, so I figured I would need a new PM. I just don't know if it would be better to go to another PM dr. or an arthritis specialist. I did just send an email to the dr. through their patient portal, which they prefer over phone calls, and said my Primary Care dr. wanted to know why she was taking me off of the tramadol?

(Seashell)
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Date Joined Dec 2012
Total Posts : 660
   Posted 3/13/2017 3:25 PM (GMT -6)   
Cntrymom:
The federal government (CDC, NIH, and DEA_ in April-16 released formal guidelines/recommendations on narcotic dosing in a document tiled the "National Pain Strategy." Since its release, physicians have taken a much more reserved approach to the prescribing of opiates. My sense is that your physician may be refusing to continue your prescribed tramadol, in part, due to the more restrictive environment.

Certainly it is your right to ask your prescribing MD why it is that he/she is electing not to continue offering your tramadol.

Before thinking that you have fibromyalgia, research and become familiar with the disorder and its characteristics. Most often, fibromyalgia is a diagnosis of exclusion. Fibromyalgia is offered as a diagnosis when no other definitive diagnosis explains a person's pain and sensitivity characteristics.

My opinion of fibromyalgia is that many people are inappropriately given the label . . and that there is an underlying health condition not fully identified.

Be cautious of any physician who is quick to give you a diagnosis of fibromyalgia.

You mention that you have had prior steroid injections. You mention that you often feel as though you have the flu with widespread aches and pains. It would certainly be worthwhile to be tested for low cortisol (hypocortisolism or secondary adrenal insufficiency). Secondary adrenal insufficiency is a relatively rare endocrine disorder that results in pituitary gland suppression and low/inadequate production of cortisol by the adrenal glands. Prior steroid exposure is a common catalyst that triggers secondary adrenal insufficiency - often years later, as the body compensates but is less and less able as time goes on.

Cortisol is the body's stress hormone and it is also the body's principal anti-inflammatory agent. Symptoms of secondary adrenal insufficiency are profound fatigue, generalized muscle and joint pain, brain fog and difficulty with focused concentration, low blood pressure, nausea and lack of appetite, general malaise and feeling as though you have a terrible ongoing case of the flu.

Ask your physician to order a saliva cortisol study and/or a morning (7-8 am time specific) blood serum panel for baseline cortisol and baseline ACTH. The blood values are time specific, so be certain that you have the blood draw between 7-8 am. A low-normal finding would be reason enough to see an endocrinologist for a consultation and more thorough testing.

I hope that your new PM physician is more amenable to placing you back on the tramadol. I would also look into basic testing for cortisol levels and ACTH. The muscle/joint pain from secondary AI can be quite pervasive and disabling. With your prior steroid use, it is certainly a possibility that low cortisol is part of your pain profile.
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

pitmom
Veteran Member


Date Joined Jan 2015
Total Posts : 2103
   Posted 3/13/2017 3:37 PM (GMT -6)   
Do you have a copy of your contract? Does it say what is considered 'violation'? What could have shown up in your labs?

I don't have my contract in front of me, but, I know I can't have ANY other doctor, not even the ER or Dentist prescribe ANY pain medication for me without contacting my PM. Just because a med is prescribed by a doctor, doesn't mean we're 'allowed' to take it.

You say you're prescribed Tramadol XR now. Does that mean your doctor discontinued the 50mg tablets? Or, are they 'break through' meds now? If the 50's were 'discontinued' and you took some, along with the XR, you'd have too much in your system which would be a violation.

Every contract is different. I suggest you read yours over, find out what 'violation' was committed and go from there.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

cntrymom
Regular Member


Date Joined Mar 2017
Total Posts : 21
   Posted 3/14/2017 8:30 AM (GMT -6)   
Seashell you mention cortisol that is an interesting thought. Doesn't that also have to do with depression? I have been taking anti-depressants for 16 years as I had a breakdown. I suffer from anxiety, depression & PTSD. I'm getting better, and now only taking 20 mg of celexa and on 100 mg. of topamax which is a SNRI instead of SSRI. I wonder if that would have to do with it also. I just don't know where to look for answers. But it sucks to hurt which makes me tired and cranky.

Pitmom, the problem I found on my "violation" was that when they started weaning me off of tramadol. The pharmacy dr. had messed up a prescription but couldn't get her to reply before the weekend, so I had them fill it..she had taken me down from 2 a day to 1 a day and I kept taking 2 a day, so now I'm short. So when I went for labs I also made an appt to see the NP at PM and she said I was in violation because I didn't take it as prescribed. I said what are you supposed to just hurt.

I understand about strict regulations, but why do people need it have to suffer, it's just like some allergy medicine, people abuse it and others have to suffer because of it..IT SUCKS!

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 660
   Posted 3/14/2017 8:47 PM (GMT -6)   
ctrymom:
Low cortisol (hypocortisolism or secondary adrenal insufficiency) is not correlated to depression or the taking of anti-depressants but it is correlated with taking opiates/narcotics over long-periods.

The risk of secondary adrenal insufficiency is now prominently listed as one of the potential side effects of taking narcotics, this as a corollary to the "National Pain Strategy" guidelines released in April-2016.

If you have low cortisol you will feel "punk." I often describe it as feeling as though I have an ongoing case of the flu x 100. Muscle and joint pain can be severe and is often generalized throughout the body - small and large muscle groups and small and large joints. The pain is widespread and non-discriminating.

Prior to my diagnosis with Addison's disease (primary adrenal insufficiency) my physician simply wrote on my chart notes: "Total body pain." The entirety of my body hurt.

Realize that adrenal insufficiency is not on the routine radar of physicians. You will need to bring it to their attention as a possibility and that you want baseline testing for hypocortisolism. There are two main diagnostic testings:
1. Saliva cortisol testing - you swab the inner surface of your cheek at 8 different time periods through the day/night. Cortisol levels for each of the time periods is compared to statistically expected values.
2. Blood laboratory draw - a morning blood test for baseline cortisol and baseline ACTH (the hormone produced by the pituitary that instructs the adrenal glands to produce cortisol). The test is time specific and must be conducted between 7 and 8 am.

Cortisol is not a fixed nor a static value in the body. The level of cortisol varies through the day - in response to perceived stressors and in response to the body's natural diurnal pattern. It is important to know that time that any cortisol value is take so to compare the value to the expected value at that time of the day.

That you have been on Tramadol for some length of time + having received steroid injections does leave possibility for hypocoritsolism.

People with undiagnosed hypocortisolism universally are depressed with low affect. That you are depressed/sad may also be a reflection of low cortisol and less a psychiatric state of being.

Cortisol is a life-essential hormone. Every single cell in the body relies on cortisol. Anyone with undiagnosed cortisol is going to feel fairly crappy, simply because of cortisol's far reaching effects on the body.

Testing for cortisol is easy. I highly recommend that you pursue one or both of the screening tests that I listed above. You will know more for looking than for not looking.

Before I was diagnosed with Addison's disease, I honestly felt like a zombie. I was barely existing. Everything was a challenge because I felt so unwell and hurt so broadly. Diagnosis was several years in the making for me. I try to educate people about hypocortisolism with the hope that someone else will have the fortitude of advocating for testing to enable a more timely diagnosis and treatment.

I hope things begin to improve for you, on all fronts,
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

cntrymom
Regular Member


Date Joined Mar 2017
Total Posts : 21
   Posted 3/15/2017 7:59 AM (GMT -6)   
Karen,

How do they treat you for it? Right I'm just taking 800 mg. ibuprofen 3 x times a day. I have a few tramadol left and trying not to take it. I'm feeling miserable most of the time. Cold most of the time. Waiting on a new referral to a new PM dr. The dr. I see is a NP and someone recommended a see a regular MD and I wondering if a arthritis specialist would work. All I know is right now I'm barely getting through the day and I can't hardly sleep, my feet are cold all the time. Sorry, I know some have it worse from what I've seen on here. I just feel lost. I have not a firm diagnosis that I know of yet of anything other than the one time a dr. sent me to a arthritis spec. due to a false positive blood test due to thyroid issues and he said I had osteo. That's it. I've been on meloxicam for years as well.

pitmom
Veteran Member


Date Joined Jan 2015
Total Posts : 2103
   Posted 3/15/2017 4:03 PM (GMT -6)   
You're taking ibuprofen AND meloxicam? STOP!!!!!!!!!! They are pretty much the same med and can cause bad gastric problems! Pick one or the other!
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

cntrymom
Regular Member


Date Joined Mar 2017
Total Posts : 21
   Posted 3/15/2017 4:42 PM (GMT -6)   
That's what pm put me on after taking me off tramadol and she knows I'm on meloxicam

pitmom
Veteran Member


Date Joined Jan 2015
Total Posts : 2103
   Posted 3/15/2017 5:51 PM (GMT -6)   
Hey, if you want a bleeding ulcer, by all means, keep taking both.

cntrymom
Regular Member


Date Joined Mar 2017
Total Posts : 21
   Posted 3/15/2017 6:45 PM (GMT -6)   
I don't want it but I don't want to hurt. I'm going to call a new dr tomorrow so this is temporary. I didn't come here to be criticized though. sad

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 660
   Posted 3/16/2017 6:54 AM (GMT -6)   
cntrymom:

It seems as though you are a bit adrift right now with the loss of your pain management physician and discontinuation of Tramadol.

I feel for you. I do. Feeling unwell for an extended period of time without a understandable source or cause is discouraging and taxing on one's emotional psyche.

I would encourage you to establish care with a trusting primary care provider - MD or nurse practitioner. I have a nurse practitioner and find that I get more attentive care with a nurse practitioner - nurses, at their core, are more attentive listeners than physicians. And I am a true believer that each of us, in sharing our narrative of our health with a care provider, holds the critical key to a correct and meaningful differential diagnosis.

An "arthritis" specialist would likely be a rheumatologist. Be aware that waiting times for new patient appointments with a rheumatologist can be 3-4 months. The speciality is underrepresented in actual physicians. The same is true with endocrinologists. Both specialities can have long wait periods for new patient appointments. The point being: Get the name of a rheumatologist and make an appointment ASAP.

Secondary adrenal insufficiency is an endocrine condition. It can be caused by the taking of corticosteroids (oral or injections). That you have had prior epidural injections leaves it open as a possibility.

Secondary adrenal insufficiency affects the body broadly because the hormone cortisol is a life-essential hormone. Cortisol is required by every cell in the body. A general feeling of malaise, of having an ongoing case of the flu x 100, is a general manifestation. Profound fatigue (standing to fix a simple meal is enough to drive you back to bed), generalized severe/moderate joint and muscle pain, nausea and low appetite, low blood pressure, difficulties with thinking and concentration.

The treatment is replacement steroids of hydrocortisone or prednisone. It is not a quick or easy "fix" however. Most people with adrenal failure always feel chronically unwell. There is simply no way to replace the intricate hormonal pathways that are the HPA axis (hypothalamus-pituiutary-adrenal). I never feel well. I make the best of an unfortunate situation.

A general practitioner could order the basic testing necessary to rule in or rule out secondary adrenal insufficiency. If the testing (which I mentioned in a posting earlier on this thread - saliva cortisol test or blood laboratory testing for morning cortisol and ACTH) is low-normal then a consultation with an endocrinologist would be necessary. This disorder is not easily treated but can be somewhat managed. But certainly you would feel better than you do now. Testing for secondary adrenal insufficiency would be worth your while.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

pitmom
Veteran Member


Date Joined Jan 2015
Total Posts : 2103
   Posted 3/16/2017 7:55 AM (GMT -6)   
I sincerely apologize for my last comment. It was rude and uncalled for. As a chronic pain sufferer, I should know that such comments only add to our pain and isolation.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14975
   Posted 3/16/2017 8:21 AM (GMT -6)   
CM, go to Drugs.com & read about Mobic & the Ibuprofen. Both are anti-inflammatory meds & taken together can cause GI issues. This was the point Pitmom was trying to make. You may want to go to your pharmacy & talk to the pharmacist to get something OTC to help protect your stomach.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 3/16/2017 8:24:01 AM (GMT-6)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7468
   Posted 3/16/2017 11:57 AM (GMT -6)   
What? I just received a script for Meloxicam for elbow tendonitis and neither my Dr, nor the pharmacy, nor any of the information I was given said anything about avoiding Ibuprofen. I checked a drug interaction website I use regularly, and it didn't flag them as being problems for each other, either.

Drugs.com does indicate it's a duplication, which of course it is since both are anti-inflammatories, but that doesn't necessarily indicate a problem.

Not arguing, just surprised and asking for more information, if anyone has a pointer to something that provides more information.

cntrymom
Regular Member


Date Joined Mar 2017
Total Posts : 21
   Posted 3/16/2017 1:57 PM (GMT -6)   
Lynnwood, Talking with a friend of mine who is a nurse. It's not a great combination, but sometimes one type is not enough either. It's like danged if you and danged if you don't. I also take an omeprazole to kind of help. I have an all over feeling of flu. They don't want you on too many anti-flammatories and they don't want you on narcotics..it's like what are you supposed to do.

You are right Seashell, I have been kind of adrift lately. Don't know what I'm doing. I don't like how this pain management is working. I used to see a regular MD who took care of it..had me ketoprofen and 3 - 50 mg. of tramadols' during the day as needed. It worked, but I can't remember now, why I changed, I think in part I didn't feel I could talk to him anymore. He had changed me to Meloxicam because ketoprofen was getting harder to get. Well I have the made the decision today, and made the call to another MD. The NP is a great and I can talk to her, but they are also an Urgent care and I think that takes up a lot of her time and I'm not sure I'm getting the exact care I need. Does that sound right. My nurse friend sees this one dr. and she recommended him, said he listens and does prescribe. I'm trying to get enough tramadol to get through until I see him, since as a new patient I can't get in until April 3. I haven't technically been dropped from the old PM yet, even though I thought I had, they emailed me and said they are taking me off ibuprofen since I said it wasn't working and putting me on diflocan.

Seashell, I am feeling more vocal since being on the new antidepressants so I plan on speaking with the new dr on what you said about the adrenal and see if he will run test for it. She said he will run tests and see what's going on and that he is easy to talk to and from what reviews I have read online that's what I need. He's around my age, so maybe that will help..lol. I know tramadol works and the NP prescribed Tylenol with codeine and I told her it knocks me out and I can't work while on it..I can't even take regular tylenol. On my original post I mentioned "Advil" I meant naproxen. Naproxen has never worked for my pain except monthly cramps...lol. Never for arthritis.

I know taking both anti-inflammatories is not good, but until I can do something else, with the new dr. I will do what I can to get through the day. ONE DAY AT A TIME has been my motto for years...sometimes I forget though.

God Bless
Reva

cntrymom
Regular Member


Date Joined Mar 2017
Total Posts : 21
   Posted 3/16/2017 2:20 PM (GMT -6)   
SeaShell

There is another thing I've noticed the last week, especially last few days. I feel like I'm cold, but my body feels warm to the touch. Checked for fever but didn't have one. Does that make any sense? Has any one else felt this?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14975
   Posted 3/16/2017 3:18 PM (GMT -6)   
CM, you would be much better off with a regular GP taking care of you instead of a NP in an urgent care. You need a dr that you can build a relationship with over time & someone that knows your history.

I know your nurse friend says this dr prescribes, however, I will be very honest with you. Several years ago, primary care drs that has treated patients for 15 yrs or longer stopped rxing pain meds. They do not have the staff or time to handle chronic pain patients. These guidelines that are in place & the drs being monitored as they are they want no part of it. With the DEA, CDC & NIH involved, PCP's bowed out on rxing pain meds quite a few years ago. This is why people are seeing PM drs. So, I guess what I am saying is do not be surprised if this dr tells you I cannot give you pain medication. I have a feeling tht you have not kept up with all of the changes that has been made in drs handling chronic pain patients & rxing pain medications. What he can do for you is get an accurate diagnosis as to what is causing you so much trouble.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Candy_Apple
Regular Member


Date Joined Dec 2015
Total Posts : 31
   Posted 3/17/2017 1:01 PM (GMT -6)   
Have you been for a full work-up with a good rheumatologist yet?

There are other diseases besides RA that can cause the type of symptoms you have. There is a whole set of conditions called spondyloarthritis - and it is common with these types of diseases that the blood work doesn't reveal very much.

Many rheumatologists label patients with these symptoms as having fibromyalgia. I was lucky enough to get hooked up with a very skilled rheumatologist early on, and he diagnosed me and got me on the right medications.

Here is a list of the different diseases in this category- read through to the very bottom of the list, and it might help you get a sense if any of these describe the general pattern of your symptoms (maybe they won't, but just tossing this out as an idea)

http://www.spondylitis.org/Types-of-Spondylitis

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 660
   Posted 3/17/2017 2:52 PM (GMT -6)   
Candyapple has some good advice and suggested areas to review with a rheumatologist.

Blood work/laboratory values are not always definitive for auto-immune and rheumatoid conditions. That is, the conditions are slow to develop over time and lab values can wax and wan. Sometimes you have to follow a rheumatologist as a patient for months to arrive at a tentative diagnosis. But a good rheumatologist will also get you started on a treatment plan and use your response to the treatment as a diagnostic barometer.

Either way, getting established with a trusting primary care physician while waiting for a new patient appointment with a quality rheumatologist is what I would recommend you focus on as first steps.

For all my years of chronic ill-health, I have usually been buoyed once I had a plan in place for a specific problem/condition. A little emotional lift of sorts. Once you have an appointment scheduled on your calendar you may feel a new mental fortitude - you are making steps in tackling a diagnosis toward treatment that brings you a more comfortable body space.
- K -

Candy_Apple
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Date Joined Dec 2015
Total Posts : 31
   Posted 3/17/2017 3:38 PM (GMT -6)   
My rheumatologist also teaches at a medical school and he has told me over the years that rheumatology diagnoses and treatment are not to be based solely on lab values alone. He says the subjective report of patient's symptoms are to be considered equally important.

I would be dead by now if I had been stuck with a rheumatologist who went off lab values alone. Mine have always showed virtually nothing wrong with me, and yet, I have had years of severe pain, and progressive disability.

My symptoms consistently responded to drugs that suppress inflammation. So even though I don't have any strong indicators in my blood work that shows inflammation (or even much on scans), we know that is my problem due to which drugs work and which ones don't.

cntrymom
Regular Member


Date Joined Mar 2017
Total Posts : 21
   Posted 3/18/2017 7:26 AM (GMT -6)   
Thanks guys and I think I will ask about a good rheumatologist. Last one was quick went off labs only. How do you find a good one?
I was pretty good mood Thurs because I did make an appointment to an MD but yesterday was not a great day kept wanting to sleep and went to bed at 9 because it felt better to be in bed like I was sick but I wasn't. I knew I wasn't much company anyway. Hopefully by the end of the of the week I can get some tramadol in that month is up and I will see a MD before the month.

Candy_Apple
Regular Member


Date Joined Dec 2015
Total Posts : 31
   Posted 3/19/2017 1:00 PM (GMT -6)   
Cntrymom- you asked how to find a good one-

you might want to take a look at the list on this page (scroll down to where it says "click here to download in pdf format") - these are rheumatologists recommended by patients who have spondyloarthritis diseases .. here is the link: http://www.spondylitis.org/Rheumatologist-Directory

here is their page with information about questions to ask, things to look for when meeting with a new rheumatologist - http://www.spondylitis.org/Locating-a-Rheumatologist
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